The Healthcare System Gets a Failing Grade When it Comes to Supporting Caregivers of those Living with Dementia

Photo by Yannis Papanastasopoulos on Unsplash

I helped coach a caregiver and his friend through what was a very stressful and horrible day. It ended well, but the experience leaves me angry and I thought I should share it, in the hopes that it will help someone else.

This is a true story of a father and son. Names and other identifying information has been changed to protect identity and confidentiality. I will call the father Mr. Smith, the son Donald, and the friend Krista.

Mr. Smith, 62 years old, was diagnosed with dementia about five years ago. He and his family learned about this diagnosis while he was a patient at the hospital. His son had told the hospital staff that he and his partner at the time couldn’t look after his dad at home any longer and there was no other family members who could look after him. The hospital told the son that if he didn’t take his dad home, he would be sent to a homeless shelter. This didn’t sit right with Donald, so he took his father home.

Fast forward five years later. Donald calls me to say his father has been needing increased care and supervision. He needs to be fed, showered, dressed, and on three occasions he has left the home without notice and was unable to safely return due to his declining cognition. He was unsafe to be left alone for long periods of time. More recently, Mr. Smith left the home and the police were called. Mr. Smith was found on a bus. He didn’t know where he was or where he was going. This was the last straw for Donald. He knew it was time to have his father placed into long-term care.

I advised Donald that he could call Home Care and get the ball rolling for either home care services (which they tried in the past but had failed) or an assessment for long term care, such as personal care home admission. Donald said that it was getting too difficult for him to manage and that he needed this dealt with, urgently. I then advised that he should take his dad to the hospital and tell the medical professionals that his dad is not safe and he can no longer safely and adequately care for his father at home. Donald is the only care provider and told me that any other family members who are aware of the situation agree with the hospitalization and potential admission to personal care home.

Donald and his friend Krista took Mr. Smith to the emergency department that had a shorter waiting time than the other hospitals. They arrived at 9:00 am with an anticipated three-hour wait. I had coached Donald on what to say when he and his dad arrived at triage. That seemed to go well.

What didn’t go well was the three-hour wait turned out to be much longer. Mr. Smith was starting to get agitated. He didn’t understand why he was there. Donald didn’t know what to do so he asked me if I thought he should leave his dad there. I advised against it, however, Donald was getting very stressed and I suggested he talk to the nurse to let them know how he was feeling and to find out how long the wait was going to be.

Donald asked the nurse what would happen if they left. There were four people waiting ahead of Mr. Smith. The nurse at the time said, “Just let us know if you leave.”

Donald and Krista decided to wait another hour. When the hour was up, Donald called me again. He said, “We want to leave dad here, but are worried about what will happen if he decides to leave the hospital.” I said that now that he is in the hospital, he should be safe. The nurse had told you to let them know you are leaving, so if you must, just advise them and then go.

When he told the nurse (a different nurse as there had been a change), they told Donald that he can’t just leave his dad there. Donald said, “Well, you have two security guards at the door, so why can’t you just watch him so that he doesn’t leave. We don’t want him to get hurt.” They then told Donald that if he left his dad there, it would be considered “elder abuse.” Krista immediately responded with, “Don’t go using that term. You don’t know what we have been through. We are here because we want Mr. Smith to be safe. We don’t want a burnt out son and a possible mental breakdown on our hands.” Donald then said, “I have no legal authority over my dad. I have no Power of Attorney, I don’t run his life for him. He is not well, he has dementia, and he needs more care than what I can provide for him. I can’t take him home.”

I told Donald that he in no way would be guilty of elder abuse and that that was an absolutely inappropriate and unprofessional accusation by the person who said that. I told him the hospital have a very vested interest (and responsibility) in keeping his dad safe. I said, “Could you imagine the front page news tomorrow if, heaven forbid, your dad was injured or worse yet, killed, after he left the hospital under their watch?” It would not be your fault, it would be theirs. You have done all you can do and you are done. You are to be commended for the care and concern of your dad until now. It will take a team of trained staff to look after him. You can’t do it anymore.”

Soon after this, they miraculously found Mr. Smith a bed. Donald walked with his dad and the nurse to the emergency room bed. The nurse asked why Donald was following, and he said he wanted to make sure his dad was settled before he left. The nurse told Donald that there were going to be a lot of people seeing his dad, such as social workers, and other professionals and that this may take a while. Donald was satisfied, told them to call with any questions, and with that, went home.

The fact that Donald was accused of “elder abuse” is absolutely unacceptable. This absurd, unfounded accusation towards a burnt-out, stressed, grief-stricken son is horrific. I feel so badly for Donald. He had to basically “surrender” his dad to the healthcare system. One that has failed Mr. Smith and his son miserably. I sometimes wonder if the emergency departments do this on purpose in situations involving dementia – delaying the exam so long that the family decides to take their agitated, confused, frail loved one home rather than wait. Things have to change.

Donald went above and beyond over the last few years to care for his father at home, on his own. Home Care was tried, but it didn’t work for a variety of reasons. The healthcare system fails our family member caregivers time and time again. I see it and hear about it quite often.

For example, I know a dear older woman who is the wife of a man with dementia. She is also stressed and wanting to get her husband on the list for personal care home (PCH). She went through all the proper channels and she was told that he doesn’t qualify for PCH as he is “still able to do so much for himself.” She is burnt out, grieving, and at a loss for what to do next.

Our healthcare system here in Winnipeg, Manitoba needs to change. It needs to recognize the stress put upon the caregiver of a person with dementia. Our healthcare system needs to stop blaming caregivers, and telling them that they are guilty of elder abuse, when in fact they are doing the most difficult thing any loving family member can do (surrender their loved one to the long-term care program) to keep their loved one safe and cared for, while at the same time saving their own sanity. A caregiver already feels shame and guilt. Why add more pressure?

If you need any coaching, advocacy, or counselling regarding the difficulties associated with dementia care, please contact me for a free 15-minute consultation.

Angela G. Gentile, MSW, RSW

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Book News: Updates

I have been working on my books and I have two updates to tell you about.

Now in hardcover: “Flourish or Fade”

My newest book, “Flourish or Fade: A guide to total well-being for women at midlife and beyond” (2021) is now available in hardcover! This is the first book that I have been able to make into a hardcover version. Amazon had approached me to see if I would be interested in trying out this new feature they were offering, so I took them up on it. Let me know if you decided to get a copy of it in hardcover. I would love to know what you think.

Paperback updated for 2021: “Caring for a Husband with Dementia”

I have updated the paperback version of “Caring for a Husband with Dementia” for 2021. I have taken out some links that no longer worked. Many of the links were from the “Alzheimer’s Reading Room” which has been removed off the internet. I have also added a reference to a book by Marie Marley and Daniel C. Potts which has a lot of the information that was in the links which have been removed. Their book is called, “Finding Joy in Alzheimer’s: New Hope for Caregivers” (2015).

Angela G. Gentile, MSW, RSW

“Flourish or Fade” Book Launch Giveaways and Contest Details

Celebrate National Women’s Health Week with us! On May 11, 2021, at 8:00 pm CST, Angela G. Gentile will be hosting a Zoom book launch for her newest book, “Flourish or Fade.” Register on Eventbrite to attend. There are a number of awesome books, services, and products that have been donated by some amazing women to help make this book event special. Please see the list below and enter to win! (see Contest Details below).

Flourish or Fade

1. Angela G. Gentile: “Flourish or Fade: A guide to total well-being for women at midlife and beyond” (paperback, $21.00 CAD value). Now available!

BrainShape Accountability Calls

2. Dr. Andrea Wilkinson: BrainShape Accountability Calls ($300.00 CAD value)

“Free Phase II Accountability Calls with Dr. Andrea of BrainShape” ($300 CAD value)

Accountability Appointments take place via TWO 60-minute video calls. 

CALL 1: Discuss your concerns and struggles + build a plan to help you address them (e.g., sleeping difficulties, chronically stressed, low energy, lacking mental focus, etc.) Whatever the problem, let’s talk about it & build a plan you can implement right away. 

CALL 2: Accountability Appointment to check-in on the goals you set out in Call 1.

The winner of the BrainShape Services prize will book their INITIAL CALL by visiting www.BrainShape.ca/call and book a time in Dr. Andrea’s calendar. This is a free offering of the supportive elements provided inside the Brain Vitality Blueprint, and helps people take the first step towards improving their health and well-being. 

How I Made a Huge Mess of My Life

3. Billie Best: “How I Made a Huge Mess of My Life” (paperback, $12.99 USD value)

https://billiebest.com/

The World Came to Us

4. Molly Duncan Campbell: “The World Came to Us” (paperback, $12.99 USD value)

http://mollydcampbell.com/

The Playground of Possibilities Card Deck

5. Kay Ross: “The Playground of Possibilities” (card deck, $20.00 USD value)

This card deck is a self-help, personal-development tool with 52 questions for you to ask yourself. Every question starts with “What would be possible for me if I…?”, to prompt you to let go of your old, limiting thoughts, beliefs and stories about yourself and the world, choose more useful ones, take inspired action, and improvise more resourceful, joyful ways of being. Kay was born in Scotland, grew up in Australia, and has lived in Hong Kong for 27 years. She’s passionate about personal development and healing, and is also an improv performer. The deck costs $20 USD plus postage from Hong Kong (the full amount depends on the number of decks ordered and the destination).  

https://playgroundofpossibilities.com/card-deck/

Seize the Moment!

6. Camille Goscicki, of Vitalaging4women, “Seize the Moment! A Guide to Living in the Present” (ebook, $4.99 USD value)

Do you live with regrets from the past, and fear the unknowns of the future?

It’s time to let go of fears and regrets and live for today. Seize the Moment! is your mini-guide to grab the present moment and live for today. It includes three bonus worksheets that will help you become more mindful. (Everyday mindfulness tips, practicing mindfulness, and becoming present for peace of mind.) Note: eReader not included.

https://www.vitalaging4women.com

The Unexpected Journey of Caring

7. Donna Thomson: The Unexpected Journey of Caring (hardcover book, $39.00 CAD value).

“The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver” by Donna Thomson and Zachary White, PhD with a foreword by Judy Woodruff (Rowman & Littlefield, 2019) Available at all online booksellers Hardcover – $39.00 CAD)

With a foreword by Judy Woodruff, The Unexpected Journey of Caring is a practical guide to finding personal meaning in the 21st century care experience.

Personal transformation is usually an experience we actively seek out—not one that hunts us down. Becoming a caregiver is one transformation that comes at us, requiring us to rethink everything we once knew. Everything changes—responsibilities, beliefs, hopes, expectations, and relationships. Caregiving is not just a role reserved for “saints”—eventually, everyone is drafted into the caregiver role. It’s not a role people medically train for; it’s a new type of relationship initiated by a loved one’s need for care. And it’s a role that cannot be quarantined to home because it infuses all aspects of our lives.

Caregivers today find themselves in need of a crash course in new and unfamiliar skills. They must not only care for a loved one, but also access hidden community resources, collaborate with medical professionals, craft new narratives consistent with the changing nature of their care role, coordinate care with family, seek information and peer support using a variety of digital platforms, and negotiate social support—all while attempting to manage conflicts between work, life, and relationship roles. The moments that mark us in the transition from loved one to caregiver matter because if we don’t make sense of how we are being transformed, we risk undervaluing our care experiences, denying our evolving beliefs, becoming trapped by other’s misunderstandings, and feeling underappreciated, burned out, and overwhelmed.

Informed by original caregiver research and proven advocacy strategies, this book speaks to caregiving as it unfolds, in all of its confusion, chaos, and messiness. Readers won’t find well-intentioned clichés or care stereotypes in this book. There are no promises to help caregivers return to a life they knew before caregiving. No, this book greets caregivers where they are in their journey—new or chronic—not where others expect (or want) them to be.

“Nobody grows up planning to be a caregiver, but many of us will become one and sometimes when we least expect it. Thomson and White bring powerful insights to help understand what it means to be a caregiver and how to truly support those of us who will travel this unexpected journey.” – Samir K. Sinha, director of geriatrics, Sinai Health System and University Health Network, Toronto; health policy research director, National Institute on Ageing

www.donnathomson.com 

Keeping it Together

8. Eleanor Silverberg: “Keeping it Together: How to Cope as a Family Caregiver without Losing Your Sanity” (paperback, $20.00 CAD value)

https://www.eleanorsilverberg.com/kit-book

I Could Be Wrong

9. Billie Best: I Could Be Wrong (paperback, $7.99 USD value)

https://billiebest.com/

Contest Details:

  • Contest open to adults aged 18+, worldwide. No purchase necessary.
  • Identify which prize(s) you would like to win. Submit the item name/number, your name and email address to Angela at caretoage@gmail.com. (Your name and email address will not be given out to anyone else, unless it is required in order for you to obtain your prize(s)).
  • One entry per person, per item.
  • Entries accepted from Wednesday April 21, 2021 at 5:00 pm CST until Saturday May 15, 2021 at 12:00 noon CST.
  • Winners will be drawn on or before Sunday May 16, 2021 at 12:00 noon CST.
  • Qualified winners will be notified by email and your mailing address will be required so we can ship you your prize.
  • Every attempt will be made to get your prize to you, however, in the unfortunate event there are restrictions in your country, you will be ineligible. In that case, another draw will be made to seek a suitable winner.

Good luck!

Angela G. Gentile, MSW, RSW

www.angelaggentile.com

The ​Long Road to Recovery

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Anyone who has had or has cancer or any other chronic illness or disease knows there is a certain amount of time when they feel they are truly on the road to recovery, recovered, or have discovered their “new normal.” I am one of those people.

I was diagnosed with anal cancer in April 2017. I finished treatment in August 2017. One and a half years later, I can say I am starting to feel “recovered” for the most part – “still recovering” in other areas –– and have discovered my new normal.

My new normal includes ongoing and long-term physical rehabilitation as a result of pelvic radiation damage. I am not complaining (radiation saved my life!), I am just sharing that although some people look great after a big ordeal like cancer, there could be ongoing battles that you may know nothing about. Invisible wounds and scars are very common for people who have experienced cancer.

Recently I attended an art show, and I received a few compliments on my appearance (the picture above was taken at the end of a Hawaiian vacation last month). I know I am feeling much better physically, and my self-image is shaping up. My hair is almost all grown back and highlighted again; I am back to yoga once weekly, and I have started back on my elliptical and doing stretches and weights. I even started wearing my FitBit again. My modest goal of 6,000 steps daily is still a ways away, but at least I am working towards it.

I have also been enjoying my new “intermittent fasting” lifestyle and my relationship with food. I am feeling in control of my life and my body. It’s taken almost two years, but I finally feel like each day I feel better and better.

I am enjoying moderating and managing support groups on Facebook. The “Anal_Cancer Support” group on Facebook is doing amazingly well and has recently achieved the 10-year milestone and the 300th member. Having cancer has expanded my social network by leaps and bounds. A profound and harrowing experience can bring more people into your life – if you want it. You just have to open up and ask for it.

The “Dementia Caregiver Solutions Support Group” is also growing and the admin team recently expanded to include two new moderators who are actual caregivers. They join three professionals to moderate and keep things on track. I find comfort in knowing I have given caregivers this safe forum to share, vent, and get advice for such a difficult time in their lives.

I am also pursuing other volunteer opportunities to help me reach more people who may benefit from my experience, passion, and support. I seem to have an infinite amount of “help” to give, and I am looking for ways to do so –– in a way that will keep me balanced and not over-taxed.

I continue to write for a company called Trualta. I am enjoying my writing projects and look forward to writing for more companies and individuals as the opportunities present themselves.

I am also helping people get married, sort out their problems, write books, develop websites and more. I am starting to consider finishing up my book on aging well (this will be my fifth book!).  Where all this will take me? Who knows. The long road to recovery takes us places that we never dreamed of. I am looking forward to continuing on this journey.

Angela G. Gentile, MSW, RSW

 

Caring for Parents with Memory Issues (Video; 28 minutes)

 

 

Where does one begin when memory problems become an issue with an aging parent?

Issues such as getting a diagnosis, terminology (What is the difference between Alzheimer’s and dementia?), resources (Book: Caring for a Husband with Dementia; App: Dementia Caregiver Solutions for iOS; Alzheimer Society), sundowning, and managing difficult behaviours are all discussed in this half-hour video.

Check out my video interview with Nancy Baker from Healing Healthy with Nancy called “Caring for Parents with Memory Issues.”

 

Angela G. Gentile, MSW, RSW

 

Keywords: Dementia, Alzheimer’s, Book, App, Essential Oils

Chair Exercises for Older Adults or those with Mobility Limitations

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Photo credit: jill111 – pixabay.com

I was approached by Joseph Jones at California Mobility to provide my recommendation on how to help an older adult with dementia stick to an exercise routine. My comments are in the article 21 Chair Exercises for Seniors: A Comprehensive Visual Guide.

This extensive guide on chair exercises for older adults (or anyone with mobility issues) includes easy-to-follow videos, helpful images, and lots of great tips on chair exercises. These exercises can be adapted for anyone! Please check out the article for helpful tips on keeping active, at any age.

Age well my friends!

Angela G. Gentile, MSW, RSW

 

 

 

The Mighty Ant: An Anthology of Short Stories for Seniors

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I am a contributor to a collection of short stories, called The Mighty Ant, edited by Jessica Bryan. This collection will delight anyone who enjoys reading or being read to.

My two stories include “You are Never Too Old” and “For the Love of Flowers.” These are my first attempts at short-story writing.

Here’s me reading my short story called “For the Love of Flowers.”

The book is in large print and is a fundraiser for the North Carolina Chatham County Council on Aging.

Get your own copy and enjoy reading and sharing with others! The stories are also great conversation starters!

Happy reading!

Angela G. Gentile

 

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Angela G. Gentile, B.S.W., M.S.W., is a registered social worker and is employed as a Geriatric Mental Health Clinician in Winnipeg, Manitoba. She is married to Agapito and has two adult children, Lorenzo and Simone. Angela enjoys writing, reading, and travelling and considers herself a realistic optimist. For more info: www.AngelaGGentile.com

“The Memory Keeper” Will Touch Your Heart and Tickle Your Funny Bone – Book Review

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Five Stars *****

JESSICA BRYAN’S SWEET AND HUMOROUS ACCOUNTS of life with her 99-year-old mother who has Alzheimer’s disease will touch your heart and tickle your funny bone. Jessica states there is never a dull moment in the Bryan household, and you will be entertained as she writes about her experiences in an easy-to-read, conversational tone. Jessica believes “When things get too heavy, you just have to lighten the mood.”

Although it is heart-wrenching when she writes about her mother “disappearing moment by moment, memory by memory,” her stories will encourage you—knowing that caring for a loved one who has Alzheimer’s has its rewards and there is humour to be found in any situation. The photos sprinkled throughout add a beautiful, personal touch. Anyone who values the importance of love and caring for one another in difficult times (especially caregivers and family members) will enjoy reading “The Memory Keeper” (2018).

Available in Kindle and paperback on Amazon.

Angela G. Gentile

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Angela G. Gentile  MSW, RSW is a clinical social worker and author of the book, “Caring for a Husband with Dementia: The Ultimate Survival Guide,” “A Book About Burnout: One Social Worker’s Tale of Survival,” “How to Edit an Anthology: Write or Compile a Collection that Sells,” and the “Dementia Caregiver Solutions” app for iPhone and iPad. She lives in Winnipeg, Manitoba with her husband and has two adult children. For more information, visit: www.AngelaGGentile.com

Call For Submissions for Upcoming Book on Anal Cancer

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Call for Summary/Ideas – Deadline for Submissions December 10, 2017

Re: Anal Cancer (AC) Book – A Collection Compiled by Angela Gentile (title to be determined)

 

Dear Potential Co-Author,

This is your chance to become a published author and to help you promote any other work you may have (books, blogs, etc.). Your contribution to this book on anal cancer will provide your invaluable insight, advice and support to others who may be going through something similar. It could help end the stigma of this disease and educate others on the importance of the HPV vaccine.

I am putting together a collection of works by many authors. I have written two other books and they are both on Amazon. This will be my first “anthology.” This book is intended to educate, inspire, strengthen and empower those affected. I am looking for chapters written by anal cancer patients/survivors/caregivers.

At this time, I am looking for 10-20 authors to provide a total of 10-20 chapters for this self-published book. I will put my time, money and energy into making this a meaningful book for those who are affected by anal cancer. It will also be of interest for those who want to learn more about the disease. If you are successful in being selected as one of the co-authors, I will help you write and refine your chapter(s) and I will also have it professionally edited.

There is no cost to you, and there is no compensation (other than knowing you will be helping others!). However, I will ensure you get two copies of the paperback book. Additionally, a portion of the proceeds will go to charity, and we will decide which one.

I have put together a listing of chapter ideas for you to review (see FILES in the closed members only Facebook group: AC Book or ask me for a listing). If you would like to do something else that is not on the list that is fine, too.

Please submit the following information via the form below, or ask me for my email address:

1. Your Name, Full Address, Phone Numbers (Home, work, cellular), Email.

2. Summary of your idea (up to 500 words). You can submit as many summaries as you’d like. Include the topic, what you want the main points to be, and whom you think will benefit most from your story or topic. The more personal and original the better! (Have a friend or family member review and proofread if you’d like a little more feedback before submitting.) Keep in mind, your completed chapter should be between 2,000 – 5,000 words.

3. Deadline for summary submission: Sunday December 10, 2017. Submit via email in form below. (.doc or .docx is acceptable. Google Docs is also accepted.)

If you already have a completed work (between 2,000-5,000 words), please feel free to submit that instead of a summary. Ideally, each chapter will be about 2,500 words but this is only a guideline.

I will review the submissions and get back to you, either way, on or before January 7, 2018.

Thank you for your interest and I look forward to your submission(s)!

Warm regards,

Angela Gentile

P.S. If you have a Facebook account and would like to be a part of the AC Book group, please request to join!

Contact me, here:

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Angela G. Gentile  MSW, RSW is a clinical social worker and author of the book, “Caring for a Husband with Dementia: The Ultimate Survival Guide”, “A Book About Burnout: One Social Worker’s Tale of Survival” and the “Dementia Caregiver Solutions” app for iPhone and iPad. She lives in Winnipeg, Manitoba with her husband and has two adult children. She is creator of the Facebook communities – “Aging Well for Women” as well as “God, Cancer and Me.” For more information, visit: www.AngelaGGentile.com

Ways to Improve Your Memory Skills Podcast Interview

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I had the pleasure of being interviewed by Kathe Kline in March 2017 for the Rock Your Retirement Show and it went live on 23 Oct 2017. Have a listen to my 30-minute audio only podcast (it’s like a radio show) to hear me talk about various topics including tips on how to improve memory skills. You can play it off your device, or download and listen to it later. There is a freebie on this as well, you just have to sign up to get a copy of it (see link below).

Link to the interview – Ways to Improve Memory Skills

Here are links to the show in popular smartphone apps:

iTunes

Stitcher

iHeartRadio

I have also provided a Freebie for the listeners – Five Strategies to Help Improve Memory Skills.

After you’ve had a listen, please feel free to comment on the Rock Your Retirement Show interview link page (see link above), or down below, here. Or just send me a personal note.

About Rock Your Retirement and Kathe Kline.

Rock on!

Angela G. Gentile

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Angela G. Gentile  MSW, RSW is a clinical social worker and author of the book, “Caring for a Husband with Dementia: The Ultimate Survival Guide”, “A Book About Burnout: One Social Worker’s Tale of Survival” and the “Dementia Caregiver Solutions” app for iPhone and iPad. She lives in Winnipeg, Manitoba with her husband and has two adult children. She is creator of the Facebook communities – “Aging Well for Women” as well as “God, Cancer and Me.” For more information, visit: www.AngelaGGentile.com