“My caregiving is wearing me out. What can I do?”

This is a post from last year about dealing with caregiver burnout.  Suggestions shared include:
* ask for help
* eat healthy foods
* increase exercise
* have a good attitude
* stay connected to your support system
* understand your strengths and weaknesses
* be proactive

The post is from the Benchmark Blog, which is a blog run by Benchmark Senior Living, senior living communities in the northeast.  See the blog post below.

Robin


www.benchmarkseniorliving.com/news-room/dear-jayne-my-caregiving-is-wearing-me-out-what-can-i-do

“Dear Jayne, My caregiving is wearing me out. What can I do?”
October 15, 2016
by Jayne Sallerson, 20 year veteran in senior care
Benchmark Blog

Dear Jayne
I love my mom dearly but some days can be such a challenge. She has Alzheimer’s, and I’m afraid of the toll it’s taking on my health, my family, on everything! What can I do?

~~~~~

It’s not easy, we understand. When every day can be so different, it’s natural for a caregiver to take a back seat to their loved one and put themselves second.

The truth is, caregiving can be tough work. The emotional and physical demands involved can strain even the most resilient person. But you need to take care of yourself. After all, the healthier a caregiver is the better able they are to support others.

“You can do just about anything as a caregiver, but you can’t do everything,” Galyn Corneby advises. Galyn speaks from experience—she is a long-time Benchmark associate and winner of our 2016 Compassionate Caregiver Award. She shared a few of her tips.

“It’s ok to ask for help when you need it.” Everyone needs help sometimes. It can be as simple as having someone help pick up the groceries, make a meal, or stop by for a visit.

“Eat good, healthy foods.” Avoid grab-and-go mealtimes. If you’re going to build resiliency, good nutrition is one of the keys. Try to eat foods that have a lot of vitamins and minerals in them, such as fruits, vegetables, whole grains and low-or nonfat dairy. Our VP of Dining Experience Guy Hemond, who is also an award-winning chef, suggests these few fast and healthy snacks (benchmarkseniorliving.com/news-room?article=recipe-of-the-month-fudgy-fruit)

“Up your exercise.” What? Who has time!?! But here at Benchmark, we like to call it ‘Multi-tasking Fitness’. While sitting at your desk or paying bills, put a workout band around your knees or ankles and work out your legs and hips! One of our associates actually does leg lifts and crunches while lying in bed watching the evening news. Our compassionate caregiver Gail Corneby told me she takes mini exercise breaks during her day. Me? I put appointments on my calendar to exercise—with myself!

Having a good attitude, staying connected to your support system, understanding your strengths and weaknesses, and being proactive are just a few of the ways you can take better care of yourself. It’s largely about recognizing that you do have choices, and the importance of making the ones most likely to support you in your caregiving role.

Let me give you two more places to turn. Our website (benchmarkseniorliving.com) and blog (benchmarkseniorliving.com/news-room) have some great articles on caregiving. Be sure to also check out the Alzheimer’s Association website (alz.org) and their tip sheet on “Important Self-Care for Alzheimer’s Caregivers.”

Until next time,
Jayne

 

Lewy Body Dementia: Journey of Nick (Aiken Standard)

This is an article by the co-leader of the Aiken, SC Lewy body dementia (LBD) caregivers support group in the local newspaper. The group’s name is “M’Aiken a Difference Lewy Body Dementia Support Group.” In the article, the group leader describes a bit about her husband Nick’s journey with LBD, provides an overview of LBD, and notes the value of caregiver support groups in helping members adjust to the “new normal in their lives.”

Robin


Lewy Body Dementia: Journey of Nick

By Nancy Sofge Martin, Facilitator, MADLBDSG
Aiken Standard, maturetimes
June 21, 2017

I started my journey with Nick After hearing about his Lewy Body Dementia diagnosis, I started to learn more about the diseases within the dementia spectrum and my caregiver journey began.

Dementia Umbrella Defined

The dementia umbrella is a way for us to have a mental picture as we understand the various dementia diseases. Dementia is the main term, and the dementia diseases fall in groups below this main term. Some examples of the diseases within this broad dementia spectrum are Alzheimer’s Dementia (AD), Lewy Body Dementia (LBD), Parkinson’s Disease (PD), Frontal Temporal Dementia (FTD). Keep in mind that there are Mixed Dementias (overlapping dementias) and all dementias are not AD. Dementia is quite challenging for family caregivers.

LBD

Symptoms may include significant memory loss, hallucinations, lost planning and problem solving abilities, fluctuating alertness and cognition, sleep disorders, balance and falling, language problems and mood changes, movement changes (walking slower with smaller steps and problems using hands and tremors), sense of direction and spatial issues, and severe drug sensitivities.

It generally takes around eighteen months to get a diagnosis because this dementia is either under-diagnosed or misdiagnosed. Fortunately, my husband, Nick Martin’s diagnosis came in about nine months. LBD is a diagnosis that affects all family members. As I was told early in my husband’s journey, “this disease is a hard one.” Of course, I was so overwhelmed with the sudden new normal as LBD took on a very fast progression of dementia, behavior issues, and physical movement symptoms. LBD has been described as Parkinson’s Disease (PD) on steroids.

Nick’s Journey

Nick, a big Clemson Tiger Fan, is a wonderful family man, who is always there for his friends and neighbors. Life was rounded with community activities by serving as the volunteer recreation director and a longtime school board member in his hometown of Blackville, SC. He worked for the State Department of Education and had a very full and happy life before “Lewy” proteins attacked the neurons in his brain and caused the symptoms listed above. Subtle LBD symptoms began prior to 2013 and following a couple of surgeries after other medical issues that year, I noticed that something was terrible wrong.

I was unfamiliar with LBD at the time of diagnosis, his neurologist immediately told me that this one had the potential to be very hard on the caregiver. Little did I know anything about the caregiving journey of LBD that I was beginning. I was an educator and truly not fully prepared for this part of our journey. Since this disease is on a fast train, I had to learn all I could for my role of caregiver and take care of managing his illness, as well as providing all household obligations in a short amount of time.

M’ Aiken A Difference Lewy Body Dementia Support Group

Our support group was started to honor Nick and to guide those caregivers experiencing a change from a NORMAL to a NEW NORMAL in their lives due to a dementia diagnosis. Patrice Tavernier and Linda Lucas came aboard, and their expertise and experience are the backbone of our group. DayBreak Adult Care Services sponsors our group, and we meet the third Tuesday of each month at 11:00 am in their Training and Outreach Center, 151 Lined Street SW, Aiken, SC 29803.

I soon learned that a caregiver must balance everything and the importance of not feeling guilty. Your mental and emotional state are extremely important as you fill the role of a primary caregiver. Is has been emphasized to me that a caregiver has to find respite opportunities and social outlets as the disease progresses. When others offer help, be open and accept it. Bring help into the home as needed to meet the daily demands of dementia care as you reserve your stamina to continue moving forward and protect your health. There is help out there! You are not alone! Caregiving is the hardest job that you will probably ever do.

“How to Stay Sane and Healthy” as a Caregiver

The “Transition Aging Parents” blog (transitionagingparents.com/blog) was started by Ms. Dale Carter of Indiana after she became a caregiver for her mother in 2009.  She began blogging to help adult children caregivers.  In 2014, Dale’s husband was diagnosed with Lewy Body Dementia (LBD).  Still, the focus of her blog remains helping caregivers, regardless of diagnosis.  (In fact, there are only three posts that mention LBD.)

Recently, Dale posted about “how to stay sane and healthy as a caregiver spouse.”  She offers six “timeless lessons,” including:

1- Recognize that you will ride an emotional roller-coaster.
2- We each can choose our response to the situation.
3- Recognize that each family member will process the situation differently and in their own time.
4- Ensure you build and maintain a circle of support for your loved one and for you.
5- Getting enough sleep, fitting in workouts, meditating, and taking time for yourself are vital to your physical and emotional health.
6- There is no right or wrong way to do things.

Most of the blog post is copied below.  Again, it applies to all caregivers, not just spouses.

Robin

————————–

www.transitionagingparents.com/2017/06/13/how-to-stay-sane-and-healthy-as-a-caregiver-spouse/

How to Stay Sane and Healthy as a Caregiver Spouse
by Dale Carter
June 13, 2017
Transition Aging Parents

As caregiver spouse for my husband (with Parkinson’s and Lewy Body dementia),  I want to share a few of my key “lessons learned.”  I wrote this “still relevant” list in another blogpost 2 years ago.  Amazing how timeless these lessons are.

1.  As a caregiver, recognize that you will ride an emotional roller-coaster. There were moments of feeling blessed for receiving an early diagnosis and then times of despair as I realized that our future had changed forever.

2.  Recognize that while there may be no cure for a loved one’s diagnosis, we each can choose our response to the situation. I’ve always been an action-oriented advocate.  Know there is a time for that BUT there is also a time for just being present with your loved one.   There is great healing in your presence, even just sitting in silence.

3.  Certainly educate yourself and your family members about the illness and prognosis. But recognize that each family member will process the situation differently and in their own time.  My daughter told me she could not bring herself to read the info I sent her, but one night she watched a Netflix show, “The Boss”, in which the lead character has Lewy Body.  She told me she sat, riveted to the show, and finally was able to understand what was happening to her father.

4.  Ensure you build and maintain a circle of support for your loved one and for you. My husband’s “twice a week” CAREgiver is a vital part of his life.  He tells me that she patiently helps him, shares in his interests and even plays the piano for him.  As for me, a colleague convinced me to take a much needed birthday getaway weekend with a childhood friend while my son took my husband to see his sister. Sometimes it seems that all the planning to do special events is just too much trouble and expense, but it is critical for your well-being.

5.  One thing I struggled with even before being a caregiver was getting enough sleep and fitting in workouts. This is not just important.  It is vital to your physical and emotional health.  Set a bedtime and get at least 7 hours of sleep.  I choose to do my workout in early morning.  It doesn’t matter when you exercise, meditate or take time for yourself.  The key is actually doing it!

6.  And, finally, recognize you are on your own unique journey. There is no right or wrong way to do things.  So much is out of your control.  If you act out of love, compassion and the humility that you need others, you will be doing the best you can for your loved one and yourself.

“10 Tips for a ‘Common Sense Approach’ to Life With a Chronic Illness”

This list of ten tips for a “common sense approach to life with a chronic illness” was posted recently to the Parkinson’s News Today website.  (I don’t believe the author has Parkinson’s Disease.)  The tips include:
– follow directions
– designate a first responder
– be organized
– use trusted sources of info
– get the most out of your appointments
– have faith in yourself
– ask for help
– don’t let negative feelings get you down
– be adaptable
– laugh

The full blog post from Parkinson’s News Today (parkinsonsnewstoday.com) is below.

Robin

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parkinsonsnewstoday.com/2017/06/26/10-tips-common-sense-approach-life-chronic-illness/

10 Tips for a ‘Common Sense Approach’ to Life With a Chronic Illness
by Wendy Henderson
Parkinson’s News Today
6/26/2017

While living with a chronic illness can be challenging, there are ways that you can make life easier and live a happy and fulfilling life. Establishing good habits and routines takes time, but as Gunnar Esiason points out in his blog Own It, there are some “common sense approaches” to living life with a chronic illness that everyone can find useful.

Follow Directions
It’s tempting to cut corners sometimes, especially if you’re running late or tired, but taking medications and therapies as prescribed and for the required amount of time will prevent you from becoming sick. Skipping meds or only partially doing therapies, not cleaning or maintaining equipment may save you a little bit of time in the short run, but may result in you becoming sick.

Designate a First Responder
Designate a person (or persons) who you can rely on to know what to do if you have a medical emergency. This can be a member of your family, a colleague, or a friend. Make sure they know how to respond to any exacerbations you may experience.

Be Organized
Keep any medications, equipment or paperwork that has to do with your health condition in good order. If you need to take medications at different times of the day, set reminders on your cellphone. Keep all paperwork in an organized folder so everything you need is easily found. Use weekly pill boxes to keep a week’s supply of meds ready. Ensure all equipment is cleaned after use so it’s ready for the next time.

Use Trusted Sources for Information
Dr. Google is notoriously wrong, as are most of your well-meaning colleagues and friends. Use trusted sources for information regarding your chronic illness. Non-profit organizations are great places to find accurate and up-to-date information. Your healthcare team is also a phone call away if you have any questions that need to be answered.

Get the Most Out of Your Appointments
Often, particularly when you’re first diagnosed, there is a lot of information to process. Taking notes when you meet your healthcare team will help you to remember all that you’ve been told. Also, preparing a list of questions before you go to your appointments will ensure that you don’t forget anything important while you’re there. Take a friend or family member along for support — they’ll often think of things you may miss.

Have Faith in Yourself
You may think that the journey you’re about to embark on will be too difficult or that you won’t be able to keep up with the treatments. Have faith in yourself — you are stronger than you realize. In the beginning, there will be many changes, but life will soon settle into a new normal and you’ll be surprised at how well you’re handling things.

Ask for Help
Don’t be too afraid or too proud to ask for help. Family and friends will want to help you out in any way they can, just as you would if the roles were reversed. Focus on your health and staying well, and allow others to do things for you. If you require financial aid or help to procure necessary equipment, non-profit organizations are a great place to start. Local volunteer groups can offer caregiving help as well as help around the house and garden.

Don’t Let Negative Feelings Get You Down
Feeling angry, frustrated, sad, or disappointed are all extremely normal reactions to a chronic illness, but you’ll need to work through these feelings and push them to one side. Focus your energy on getting well and try to be positive about your treatment.

Be Adaptable
It’s likely that you won’t be able to live your life exactly as you did before. Depending on the severity and type of chronic illness you have, you may find that you simply can’t do as much as you used to. Be more selective with your calendar so you have more energy and enthusiasm to enjoy each activity and event. Ditch bad lifestyle habits that could make your chronic illness worse, and try to embrace new healthy ones instead.  Learn that it’s OK to say no to people — your health comes first and they should be able to accept that.

Laugh
Laughter is great medicine. It won’t cure your chronic illness, but it will make living life with it more fun. Take time to do the things you enjoy and that give you pleasure, spend time with people who make you happy and take joy wherever you can find it.

Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Lewy Body Dementia Canada website, and Top 10 Priorities After an LBD Diagnosis

Someone in our local Lewy Body Dementia (LBD) support group shared with me that there’s a Lewy Body Dementia Canada website. You can find it at lewy.ca (or lewybodydementia.ca – both work). The site was launched in November 2015 by Timothy Hudson. Timothy notes that he keeps his Facebook page more up-to-date than this website.

Nonetheless, I came across several worthwhile pages on Lewy.ca, including this article on the top 10 priorities after an LBD diagnosis. (Actually, the article is a list of 11 items.) The list was created by Timothy Hudson in collaboration with a group of caregivers on an LBD caregiver Facebook group (www.facebook.com/groups/lyndseywilliams). I think all of the items on the list are still relevant even years after the diagnosis.

The priorities are:

1. Actively advocate for your loved one.

2. Find out what they want for care and quality/quantity of life.

3. Get Powers of Attorney, both for medical care and finances.

4. Rigorously assess finances.

5. Be ultra careful with medications.

6. Get a supportive specialist or Neurologist and partner with them.

7. Keep your loved one and yourself socially engaged and physically active.

8. Join and actively participate in a support group online or in person — ideally, both.

9. Keep learning and researching.

10. Remind yourself that you are stronger than you think, and that you can get through all this.

11. Forgive. Be patient. With them, with yourself, and with everyone involved.

You can find the details behind these priorities here:

www.lewybodydementia.ca/top-10-priorities-after-lewy-body-dementia-diagnosis/

Top 10 Priorities After Lewy Body Dementia Diagnosis
April 24, 2016
Lewy Body Dementia Canada

Robin