Can Caregiver Self-Care Be Selfish?

by | May 7, 2022

Is it Selfish for a Caregiver to Take a Break?

It depends.  If a caregiver is leaving an incapacitated loved one unattended or in an unsafe situation, the answer could be yes.   But this is (hopefully) rare.

Real-life situations?

I was speaking to a group about caregiving, and one lady lamented, “My mom is so sick with cancer, I feel guilty when I do anything enjoyable.”  Sad, but unfortunately many of us can relate to how she feels.

In “Remarkable Caregiving”, there is a story of a couple, Sandra and Ken. They took in Sandra’s dad, who had Parkinson’s, to live with them.  We read, “At times, when her husband could see Sandra reaching a breaking point, he would say, ‘I’m going to take care of Dad Friday night, and you go to a hotel’. “

Selfish or selfcare? You be the judge.

Guilt, exhaustion, and burnout often happen while caregiving. What can a caregiver do to address their own needs without being selfish?  We find ideas from HelpGuide*.

  • Maintain your personal relationships. Don’t let your friendships get lost in the shuffle of caregiving. These relationships will help sustain you and keep you positive. If it’s difficult to leave the house, invite friends over to visit with you over coffee, tea, or dinner.
  • Share your feelings. The simple act of expressing what you’re going through can be very cathartic. Sharing your feelings with family or friends won’t make you a burden to others. In fact, most people will be flattered that you trust them enough to confide in them, and it will only strengthen your bond.
  • Prioritize activities that bring you enjoyment. Make regular time for hobbies that bring you happiness, whether it’s reading, working in the garden, tinkering in your workshop, knitting, playing with the dogs, or watching the game.
  • Find ways to pamper yourself. Small luxuries can go a long way towards relieving stress and boosting your spirits. Light candles and take a long bath. Ask your spouse for a back rub. Get a manicure. Buy fresh flowers for the house. Whatever makes you feel special.
  • Make yourself laugh. Laughter is an excellent antidote to stress—and a little goes a long way. Read a funny book, watch a comedy, or call a friend who makes you laugh. And whenever you can, try to find the humor in everyday situations.
  • Get out of the house. Seek out friends, family, and respite care providers to step in with caregiving so you can have some time away from the home.

*For more ideas and information visit https://www.helpguide.org/articles/stress/caregiver-stress-and-burnout.htm. HelpGuide is a small independent nonprofit that runs one of the world’s top 10 mental health websites. Over 50 million people from all around the world turn to HelpGuide each year for trustworthy content they can use to improve their mental health and make healthy changes.

Find more caregiving resources and information on Nancy’s books, including “Remarkable Caregiving: The Care of Family and Friends” at  https://nancyrpoland.com/caregiver-resources/

This Report Broke My Heart

by | Jul 21, 2021

Alarming CDC Study

I recently read an article that broke my heart.  It began:

“Parents who are also caregivers struggle with suicidal ideation, new Centers for Disease Control (CDC)  study shows.” It was written by Kara Baskin, Boston Globe Correspondent, Updated July 2, 2021, 8:00 a.m.

(Definition of “suicidal ideation” – when you think about killing yourself; the thoughts might or might not include a plan to die by suicide. WebMD)

Ms. Baskin’s by-line said, “We need to be more open about the stress of caring for aging parents, because our mental health depends on it.”

The CDC study found that parents-caregivers (people taking care of both kids and aging adults) had significantly worse mental health than adults not in these roles. Among parents-caregivers surveyed, approximately 50 percent reported serious suicidal ideation in the past month.

In addition, the CDC reported people with caregiving responsibilities for children and adults had eight times the odds of serious suicidal ideation compared with non-parents/non-caregivers.

Yes, friends, it can be that hard.  People are stressed out by caregiving for adult parents raising kids, working, and balancing our modern, busy lives. I know, I have been there (although fortunately I did not consider suicide as an option.)

Ms. Baskin’s article presented various ideas on how caregivers, especially for ageing parents, can cope. Ideas include learning to identify yourself as a caregiver, hiring help, not berating yourself if you feel clueless. You can read more details  here:  CDC Study

Nancy, Can You Help? 

I recently received a call from a couple I know well, “Richie” and “Alecia” (not their real names).  In their 40s, they are trying to figure out what to do about Alecia’s dad, who is aging, falling more, but wants to stay in his home. Did I have any ideas?

Fortunately, he is a veteran, and they can tap into veteran resources. I recommend Alecia go to a workup at the VA with him, where they will assess his physical, mental, and emotional well-being.  I also suggested they look into resources for homecare to help him fulfill his goal of being able to age well at home.  An easy idea they can implement is to obtain adaptive equipment for his home, such as grab bars in the bathtub (which has become a particular hazard for him), and a raised toilet seat.

My hope is they took a deep breath after the call, knowing they are not alone.

This is why I research and issue information for caregivers – even for those who may not yet identify as caregivers. I want to help others navigate their caregiving roles, and have a better experience with their loved ones.  Please help me educate  others by:

  • Recommending a free subscription to our monthly newsletter, “Caring for the Caregiver.”
  • Reading and sharing “Dancing With Lewy” and “Remarkable Caregiver”; both contain practical advice for navigating the caregiving role.
  • Following these blogs.
  • Researching and being ready to help others find caregiving resources; a good place to start is at https://nancyrpoland.com/caregiver-resources/.

And if you as a caregiver struggle with “suicidal ideation”, please, please, please reach out for help today.  The national suicide hotline is 800-273-8255; help is available today.

 

“Dancing With Lewy” is available wherever books are sold on-line.  Both books can be ordered from https://nancyrpoland.com.

“Remarkable Caregiving” will be released to the public November 3, 2021. 

A Mom is a Mom is a Mom – Or is She?

by | May 8, 2021

Stories of Amazing Moms

I have been all sorts of a mom.  A stepmother, a birth mother, a mother-in-law, a foster mother. I have helped care for children that belong to another mom, because no kid can have too many people to love them.  But I have never been the kind of mom written about in “Remarkable Caregiving, the Care of Family and Friends.”

In “Remarkable Caregiving”, my next book, you can find six stories of remarkable caregivers, whose stories will inspire and teach you.  Two of the stories highlight moms of kids with unique challenges. Buddy was born with a variety of disabilities. His mom Carol went to extraordinary lengths to care for Buddy, finding unique ways to address his many physical, learning, and emotional needs.  She challenged the legal system, the schools, and the medical community to provide the best care for her amazing son.  Carol and her husband also found ways to treat their daughter as special and unique.

You will also meet Diana, another mom, who poured her heart into her son with Down syndrome.  You will meet her son Tyler, who grew to adulthood, presenting new questions about his future.  Diana not only poured herself into raising her son, but she and her husband found the meaning of suffering by involving others in the Down syndrome community.

“Remarkable Caregiving” will be available from https://nancyrpoland.com in June 2021. It will be released to the public in November 2021.  If you are interested in hearing more about “Remarkable Caregiving” at [email protected].

Enjoy this poem with from “Dancing With Lewy: A Father Daughter Dance Before and After Lewy Body Dementia Came to Live With Us.”

Oh, mother dear, the years have passed,

And so gray has grown your hair.

Seems like yesterday, I was just a child,

And you so young and fair.

Time goes so fast, and now I’m grown,

And lines caress your face.

The years have surely swept us on,

So swift has been the race.

You dressed me in such pretty things,

And set curls in my hair.

But now you’ve grown older,

And it’s my turn to show I care.

It seems so clumsy and hard at times,

To pay you all I owe.

Please forgive me, mother dear,

If how, I do not know.

Our blessed heavenly Father

has prepared a reward for you.

He has given your grandchildren

a mother who will do

The same pleasant and joyful things for them,

As a gift from us to you.

 Written by Lee Eggerud

If you are a mom, if you have or had a mom or grandma who meant a lot to you, or a substitute mom, celebrate moms with me this mother’s day.

 Next month we will celebrate dads!

What Happens When Money Runs Out

by | Jan 24, 2021

Applying For Medicaid

 

You may come to the time when your loved one has to be in a care  home, and they do not have the financial resources. This is not just for elderly people, it can also apply to other vulnerable individuals.  In this situation, people in the U.S. may turn to Medicaid, otherwise known as Medical Assistance (“MA”).  This is not to be confused with “Medicare”, the U.S. government healthcare plan for anyone 65 and older. Medicare may cover a short term stay in a care home, but it does not cover long term care.

As happened with my family, we had to place my dad in a nursing home due to his advanced dementia.   He had limited assets, and I knew if he lived long enough, we would have to eventually apply for MA. (He needed it the last five months of his life; the cost at that time was $7,000 a month to stay in memory care.)  Important things you should know:

  • If you or a loved one may need to qualify for Medicaid one day, there is a five year “look-back” period. You will need paperwork regarding house sales, vehicles, and nearly every other expenditure.    Come up with a good system to track every dollar, including what is spent on health care.  Also needed are birth, marriage, and divorce certificates, military service paperwork, home and vehicle sales, immigration documents if applicable, and more.  Keep all such documents in a central location.
  • The person qualifying has to “spend down” their assets. At the time my dad qualified, he could have no more than $3,000 in assets, including life insurance. One way to offset future costs is to purchase a funeral plan.  If done correctly, this money does not count against one’s assets. When my parents’ house was sold, we immediately appx. $6,000 each in funeral plans for each of them, which did cover their deaths and basic funerals.  (This did not count burial, as they were buried for free at Fort Snelling, as my dad was a veteran.)  It is not cheap to die!
  • We then had to pay back to the state all his leftover assets (less than $2,000) to make up for receiving MA.
  • I recommend seeking the help of an elder care attorney to understand how this all works. The laws may vary from state to state, are complicated, and it is difficult  to find specific information.

I wrote this in the book “Dancing With Lewy: A Father Daughter Dance Before and After Lewy Body Dementia Came to Live With Us”:

“In September 2011, Dad ran out of money. Of course, I knew this was coming, so I was prepared. (Thanks to my mother and her bookkeeping, I still had the records from when I initially applied for MA assistance years ago when they did not qualify.) Finally Dad was approved, and the government paid his nursing home bills of over $6,000 a month.

When my parents sold the house in July of 2006, they gave each of us four daughters $1,000….For five years, I wondered what would happen if my parents ended up needing MA, as the government has a five year “look-back” period. Would we have to declare that they “gifted” us this money? I asked my oldest son who works for the county. He said yes, we would have to declare any significant funds they gave away within the last five years.

The date he began receiving Medical Assistance was in September 2011. The five-year period ended July 2011.

Coincidence? Luck? No, I don’t think so. I believe God was protecting my parents, just as he had promised, and he was also looking out for us sisters, as this $1,000 was basically our entire Inheritance.”

Here is a link to a brochure explaining more about MA.

https://www.medicare.gov/publications/#results&keyword=11409

As your loved one ages, keep in mind the five year look-back period.  Any significant gifts given away during that time may have to be repaid. Financial and other related records will be needed for that five-year look back period.  Again, you could seek the advice of an elder-care attorney to learn more about how MA works, and what may be applicable to your situation.

Information about “Dancing With Lewy” and links to caregiving resources may be found on https://nancyrpoland.com. 

Support for our Veterans in 2021

by | Jan 3, 2021

As we move in 2021, let us move forward cautiously with hope for health, economic recovery and a return to family and friends.  Let us also remember those who are grieving, fearful and suffering.

A group we all need to remember and support is our veterans and their families.  In this blog I’ll highlight a couple veteran’s resources.

Veteran Centers such as this one being relocated in Anoka, Minnesota, are community-based counseling centers, providing a wide range of social and psychological services, including professional readjustment counseling to eligible Veterans, active duty service members, including National Guard and Reserve components, and their families. These services help veterans make a successful transition from military to civilian life.  They also help after a traumatic military event. Looking forward to learning more about this facility when it opens.

As many of you know, veterans can receive healthcare and medications from a local VA Center.  They also offer mental health services and suicide prevention programs.   Your county likely has a Veterans Services Office (VSO) who can help connect you with benefits.

Here are a couple veteran’s services that may not be well known.

Program of Comprehensive Assistance for Family Caregivers (PCAFC)

Eligibility for the PCAFC has expanded.  Go to this website to download all these free materials:

https://www.caregiver.va.gov/

new Caregivers PCAFC – Expansion Booklet (PDF)

Caregivers PCAFC – Application Process Fact Sheet (PDF)

Caregivers PCAFC – Expansion Fact Sheet (PDF)

Caregivers PCAFC – Eligibility Criteria Fact Sheet (PDF)

Caregivers PCAFC – Monthly Stipend for Primary Family Caregivers Fact Sheet (PDF)

Caregivers PCAFC – Current Participant Fact Sheet (PDF)

The veteran and caregiver will need to apply together and participate in an application process to determine if you’re eligible for the Program of Comprehensive Assistance for Family Caregivers. You’ll both need to sign and date the application and answer all questions for your role.

You can apply online right now.

 

Aid And Attendance

This is my dad, as a young Navy soldier.

Another benefit was a life-saver for my parents, and one I had not heard of until my sister and I attended a dementia conference at the University of Minnesota.  It is a special benefit to war era veterans and their surviving spouses called Aid And Attendance.  You can read in my book “Dancing With Lewy: A Father Daughter Dance Before and After Lewy Body Dementia Came to Live With Us” how this benefit helped my family.

This tax-free benefit provides financial assistance to help cover the cost of long-term care in the home, in an assisted living facility or in a nursing home.  It is for those veterans and surviving spouses who require the regular attendance of another person or caregiver in at least two of the daily activities of living such as bathing, dressing, eating, toileting, and transferring.

It may take time to obtain the benefit. However, if your loved one qualifies, they will pay the monthly benefit back to the day you first apply.  If the application process seems overwhelming to you, contact your local VSO, or an elder care law attorney.  I had to follow up and be quite persistent when I applied for the aid for my dad, but he received the backpay, plus the healthy monthly allotment for several years. This allowed my folks to live in decent housing and have the resources they needed to live almost to the end of my dad’s life. I called the local VSO a number of times for advice on how to obtain this benefit.

  • If you or a loved one are veterans, be diligent in seeking out resources.
  • If you have the means, support veteran’s organizations that supply housing, healthcare, mental health resources or other needs for our veterans.

May God bless each one who is serving, has served, or has loved one who has faithfully served our country.

Three Legendary Men; One Shared Tragedy

by | Nov 9, 2020

What Do These Three Men Have in Common?

A Minnesota Congressman, the owner of a nightclub, and a baseball Hall of Famer – what could they have in common?  For one, they whole-heartedly pursued their individual passions.   Second, they all died within the past few months, in mid-to- late 2020.

There is something else they shared in common, a tragic connection.  But first let us first meet these three great men.

Jim Ramstad served in the U.S. Congress for 18 years. He is known for working across the aisle, and championed mental health and addiction issues.  (Couldn’t we use more of that now days!)  https://patch.com/minnesota/across-mn/longtime-minnesota-congressman-jim-ramstad-dies-74

Allan Fingerhut was the first owner of First Avenue, a Minneapolis nightclub made famous by the filming of Prince’s “Purple Rain”. First Avenue is world-renowned and has hosted many legendary artists. He was also a Vietnam Vet. https://bringmethenews.com/minnesota-lifestyle/allan-fingerhut-first-avenues-original-owner-dies

Tom Seaver was one of baseball’s greatest right-hand power pitchers. He won 311 games for four major league teams, primarily the Mets.  (He had COVID-19 when he passed away).  https://www.nytimes.com/2020/09/02/obituaries/tom-seaver-dead-coronavirus.html

What tragedy did these three men share?   All three suffered from some form of Lewy body dementia (LBD).

What is LBD?  It is the second most common form of dementia, after Alzheimer’s. (Think of “dementia” as the umbrella term; Alzheimer’s, LBD, Vascular dementia, and certain other degenerative brain diseases are types of dementia.)  Some people with LBD have symptoms similar to Parkinson’s disease, and many of the brain changes are the same.  Jim Ramstad was said to have “Parkinson’s with Lewy”.  However, LBD can also take its own path.

The most common symptoms of LBD include:

  • Changes in thinking or executive function (planning, processing information), memory, or the ability to understand visual information.
  • Changes in cognition, attention, or alertness
  • Problems with movement such as tremors, stiffness, slowness, and difficulty walking
  • Visual hallucinations
  • Sleep disorders
  • Mood changes such as depression, apathy, anxiety, agitation, delusions, or paranoia
  • Bodily changes such as blood pressure control, temperature regulation, bladder, and bowel function https://www.lbda.org/10-things-you-should-know-about-lbd/

Why is this noteworthy?   Recognizing symptoms will help family members know when they need to seek medical intervention.  A physician may order a neuropsychological evaluation be performed; however they will count on family members to report specific behaviors.  While there is no cure for LBD, you may be able to help a family member or friend by understanding this and other dementias.

Part of the reason I wrote “Dancing With Lewy:  A Father Daughter Dance Before and After Lewy Body Dementia Came to Live With Us” was to educate people about dementia.  My dad was first diagnosed with vascular dementia, then six years later, several months before he died, we were told he had LBD.  (He likely had both diseases).  Without knowing he had LBD, we had little idea what to expect as his dementia progressed.

You can educate yourself by visiting websites such as Alz.org, lbda.org, or other ones specific to the diagnosis.  Be an informed caretaker; visit https://nancyrpoland.com/caregiver-resources/ for ideas and links to many other websites.

If you would like to obtain a copy of “Dancing With Lewy”, there are three ways to do so:

  • Order it off my website, https://nancyrpoland.com, and I will ship it to you.
  • Buy the E-book off Amazon.com.
  • It will be officially released on February 16, 2021.  You will be able to buy it in on-line bookstores.

I hope you will never need this information, but chances are you will have a loved one suffering from dementia at some point.  Learn all you can, be patient with those who dementia-related symptoms, and find ways to advocate and support research.