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

Book News: Updates and a New Book

I have been working on my books and I have two updates and one new book 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).

Temporary cover: “Caring for Someone with Cognitive Decline”

I have completely revised, updated, and expanded my book on dementia caregiving to create a new book, “Caring for Someone with Cognitive Decline: Information, tips, and support for caregivers” (2021). It’s reasonably priced at $12.95 USD (eBook is $3.95 USD). This book was a project I had been wanting to do for a long time. I had been told the original book, “Caring for a Husband with Dementia” was suitable for all caregivers. After working with many people with dementia and their families, I felt it was time to complete this book project. The book is now available on Amazon, however, the cover is only temporary. I am currently in the process of seeking a new book cover design, so if you have any ideas, please let me know!

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

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

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

This Self-Help Book for Caregivers Educates, Supports and Comforts

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When I titled my book “Caring for a Husband with Dementia: The Ultimate Survival Guide” (2015) I did not expect to have people mistakenly assume that I am a wife caring for a husband with dementia. The warmth and sympathy I receive from people who don’t know me personally has been incredible. I gently explain that I am not a wife caregiver and that the book is inspired by the experience I had in counseling eight amazing caregiving women.

When I was deciding on a topic for my master’s degree final project, I decided to focus on older women. I explored what issues are affecting them, and the subject of caregiving came up quite often. I did some research on the subject and discovered that there was very little written about women who care for husbands with Alzheimer’s or a related dementia. My career as a geriatric clinician and social worker exposes me to many different mental health issues, and dementia is unfortunately a common one. I quickly became an expert in assessing and screening for dementia, and recognizing the symptoms of caregiver stress and burnout.

The short-term, individual counseling program I designed, implemented and evaluated with eight caregiving wives was very rewarding and successful. It inspired me to want to help others like the women I had learned so much from. What started out as a small booklet turned into a 16-chapter book. “Caring for a Husband with Dementia” was written specifically to help women who care for husbands who have been diagnosed with a dementing illness such as vascular dementia or Alzheimer’s disease. I dedicated this book to caregiving wives, everywhere.

Writing this book came surprisingly easy to me. I called it a “Divine Intervention.” I received help from colleagues and other experts in the field who generously donated their time reviewing, editing and offering feedback. It is a unique, informative and therapeutic self-help type of book. The book offers opportunity to make it personal for the reader. There is space for self-reflection on important questions. Don’t know what to “Google” to find your local resources? I’ll help with that, too. There is a listing of helpful and important resources, plus more.

All of the reviews and feedback I have received thus far has been very positive. Some of the more helpful feedback has been that this book is written not only for wives, but for all caregivers. I have been told this book is like a bible and it is kept at the bedside and is read every night. It’s a reference guide, a companion, and a source of education and support. It’s like a year’s worth of therapy all in one book.

I know this book has helped spouses and other caregivers. They have told me, “Everything I was thinking, feeling and wondering about was written in this book.” I am honoured to be able to help those who are struggling with the issues of diagnosis, getting help, difficult behaviours, grief and loss, legal issues and more. I have been at book signing events where even men say they want their wives to buy this book as they want them to be prepared – “…just in case.”

My hope is that this book reaches those who are in need of education, support and tips on how to survive the difficult task of caring for a loved one with dementia. It is also a great gift for someone in need.

Angela G. Gentile, MSW, RSW

Link to original article on #AlzAuthors, published 23 Nov 2016.

 

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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 two adult children. She is passionate about all things related to Aging Well. For more information, visit: www.AngelaGGentile.com

Myths or Truths? A Guide to Achieving Retirement Community Gold Standard

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Image courtesy of pixatawan at FreeDigitalPhotos.net

(This article was written in collaboration with guest Alan S. Wolkenstein, MSW, ACSW)

As an administrator or manager of a retirement community, you likely hold specific beliefs and understandings of the residents (or tenants) and the workings of the facility. These understandings may be ones that you have learned from others, or perhaps you have come to believe based on your own experiences. Sometimes beliefs about your retirement community can hinder growth and success due to the fact that they are myths (widely held false beliefs).

Myths can hold us back from achieving our full potential for success. While myths exist to help us explain and make sense of our experiences, they can be, and often are not helpful in that they simply are not true. Sometimes these traditional stories are widely held but are not based on facts. Taking our head out of the sand and taking a close look at reality can help us move forward.

Do You Hold Any Myths About Your Retirement Community?

It is important to identify if there are any myths you hold about your retirement community and those you serve. By asking yourself if there is truth or if it is simply myth to each of the following thirteen statements will place you in a more favorable position to exert constructive political, cultural or systems energy. By answering these statements honestly, you will be able to identify them as either truths or myths.

If you happen to recognize some of these statements as myths, you may come to realize that these untruths can inhibit the functioning of your retirement community in meeting the best needs of the residents (and families), staff and institution (bottom-line). The acknowledgement and examination of these falsely held beliefs can challenge you to take on the potentially arduous task of transforming them into truths.

There is a potential for great change in the overall success of your retirement community by focusing on challenging or debunking any myths and doing something about it. Myths are generally difficult to disbelieve due to your strong emotional attachments to them. For example, you may find it a bit troubling to realize your residents may or may not be provided all the services that are essential, available or needed.

Myths or Truths?                                            

While we have developed thirteen statements, we believe there will not be less. There may be some that have not been included that can be exchanged or added for conversation and potential action. They are not mutually exclusive, but designed in a way to encourage thoughtful reflection by individuals and for discussion within the staff or team at your retirement community.

Consider these thirteen statements and decide if these statements are myths or truths when it comes to your retirement community:

  1. Our residents are a priority, and our retirement community has all the amenities, staff and services the residents need for enhancing their quality of life.
  1. We understand that older adults who have chosen to come to our retirement community may or may not have completed and successfully coped with their Family Life Cycle¹ tasks (such as launching adult children, retirement, widowhood, accepting bodily changes and dealing with the realities of their living arrangements), eliminated their intra-familial conflicts and made all important amends. They may or may not be emotionally and psychologically prepared to handle potential losses, grief experiences and transformation.
  1. Our retirement community adopts a holistic approach to care and has fully trained and specialized staff to identify, assess, treat and monitor the physical, emotional, psychological, cultural and spiritual needs of our residents. Administrative personnel and managers are up-to-date on the resources available and continuously strive for improvements in this area.
  1. Residents are properly screened and/or assessed by qualified personnel for anxiety, depression, mood and thought disorders and mental status (including Alzheimer’s disease and related dementias). If these services are not available in-house, staff are trained to identify issues. Residents and/or family advocates are encouraged to seek out advice from an appropriate health care or mental health professional.
  1. There is an active involvement with families and social/cultural communities of residents for continuity of attitudes, values and belief systems. In addition, all elders need connections with their significant others and our retirement community fosters and encourages these relationships.
  1. Administrators, managers and select staff are encouraged and trained to provide continuing adult education programming and support within our community to individuals and families in troubled elder-parent and adult-children relationships.
  1. Our retirement community welcomes and embraces the roles of residents’ advocates and an ombudsman in the holistic and total care concept of our residents.
  1. Our retirement community has sufficient and ongoing staff training opportunities, supervision and evaluation of all appropriate staff.
  1. If present, frequent staff turnover is vigorously addressed. We believe a disjointed or fragmented system can lead to a less than viable milieu for residents and staff morale. We strive for continuity and consistency. Satisfied staff leads to satisfied residents.
  1. Administrative personnel have a clear understanding of and methodology to deal effectively with staff burnout or impairments (permanent or temporary).
  1. Our retirement community has a Human Resource Department that is staffed with (or has access to) professional mental health personnel: those who can identify, assess, and refer for proper treatment (or other actions) staff who are troubled, deficient, show signs of burnout and impairment, and those in violation of local, state, federal and institutional laws and guidelines.
  1. Our retirement community understands and encourages interagency cooperation within our communities.
  1. Our retirement community interacts with educational and academic resources to foster community public awareness and psychosocial services for older adults within our community. This includes placement, internships and fieldwork for learners in the field of geriatrics and mental health services. All such learners are supervised and guided by specialists in eldercare from appropriate professions within the institution.

While self-imposed institutional denial that services are not lacking and provided, or rationalizing that if they were needed, they would be adequately provided, ultimately such institutional defenses are insufficient and hinder best care and utilization of accumulated knowledge and skills in residential care for older adults.

No retirement community consciously chooses to deny services to their residents and staff, but may be acting only from a strong and important fiscal basis. However, this is insufficient. Boards and administrators may be very good at their roles, but not sufficiently trained to assess the holistic need of their residents and staff. They may ultimately fear resources are not sufficient to turn any of the myths into real-time community truths.

If we believe we are functioning from a more enlightened perspective than the one that a retirement community is meeting all these beliefs as truths when they are not, then conceptual shifts are in order.

Your Score and What To Do About It

If you answered “Myth” to any of the above statements, then an action plan for remediation and change may be essential.

This action plan may include:

  • an examination of policy and procedures
  • reassessment of priorities
  • modification of scarce resources
  • finding and securing new funding to change some specific myths to truths
  • a review of long-range goals and objectives

Achieving Gold Standard

We have painfully learned that if a system remains profit and profit margin motivated and not sufficiently focused on customer/family/consumer needs and satisfaction, it will not survive in these difficult and challenging times. There will be intra-system anxiety when confronted with the two, apparently opposite, goals. Anxiety can be a powerful force in creating a milieu that fosters change, enlightenment and growth. If guided and properly mentored, anxiety can help individuals achieve their full potential. We believe this is also true for retirement communities.

It is a truth that a society is best measured by how it cares for its very young and very old. Let your retirement community be the gold standard of care for its residents and their families. Maybe now is the time to secure and support consultation to reach new visions for your retirement community.

Alan S. Wolkenstein, MSW, ACSW
Clinical Professor of Family Medicine (Ret.)
University of Wisconsin School of Medicine and Public Health
Wolkenstein and Associates, LLC
Mequon, Wisconsin, 53092
Alan.Wolkenstein@gmail.com

Angela G. Gentile, MSW, RSW
Specialist in Aging

¹ Wolkenstein, A. S., Lawrence, S. L., & Butler, D. J. (1985). Teaching “family”: The Family Medicine Chart Review. Family Systems Medicine, 3(2), 171-178.

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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 two adult children. She is passionate about all things related to Aging Well. For more information, visit: www.AngelaGGentile.com

 

Twelve Areas to Consider When Thinking About a Retirement Community with Lifelong Services

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Image courtesy of powerbee-photo at FreeDigitalPhotos.net

(This article has been written with guest blogger, Alan Wolkenstein MSW, ACSW)

As family members age, there may come a time when an older person’s needs can no longer be met in his/her current home. It may be unsafe, there may be too many worries, or it may be stressful for all involved. For example, if Mom and Dad lived in their moderate-sized bungalow for the past 40 years, things may change dramatically when one of them passes away. Maybe Mom is now left in this house on her own, and she is overwhelmed with all there is to do. Even with family support, and the supports from other agencies and programs, Mom is still not being cared for the same way she was when dad lived with her. Although Mom does not want to move from the home she has known for so many years, sometimes a move to a more supportive environment is needed. Having this discussion can be difficult.

There are many issues that can arise with respect to an aging family member and housing needs. Illness, finances, mobility, socialization, recreation and access to services are some of the issues that may have to be considered. How does one make the right choice? Should the older family member stay in the house longer, or move to an appropriate “elderly persons housing”? Maybe he/she should move to a retirement community, or a place that also has lifelong service options. Should the person move to a 24-hour care facility like a nursing home? A good quality of life is usually the overall goal.

Conversations About Moving Can Be Difficult

Conversations about relocation may become uncomfortable and anxiety-provoking because they usually consist of making major changes in where one lives, relationships and even in family dynamics. The older person him/herself or other family members may be thinking about these issues, but the conversations may be avoided in order to prevent upset or problems in the relationship. We already know that everyone seems to have a slightly different opinion on the subject.

For those directly involved, the stakes are very high, and previous attempts to have such conversations may have not turned out very well. People can feel unsure of themselves and the older adult may experience that their own wishes may be disregarded by their children who push for changes to ensure a more safe and healthy environment. Relocation usually involves downsizing, a major disruption, adjustment issues, loss, and a change in daily routines. Ultimately, it should also come with benefits that outweigh the negatives.

This may be the first time adult children have seen their parent(s) unsure of themselves, possibly afraid of the future, and even angry or refusing to participate in these talks. It seems that no matter what is decided, many feelings may be hurt and someone will feel disregarded and not appreciated for their wishes.

Conversations About Moving Can Be Welcomed

However, in many situations, the family discussions around this topic go well. For example, an older adult may want to move on. In this case, the family can come together with a unified plan that seems positive and helpful to the whole family. Then the issues become where to look, how to assess, and when to choose a place.

Making Decisions Regarding Housing Needs Can Be Confusing and Complex

For others navigating the housing dilemma, the situation is confusing and complex, and there seems to be no way to satisfy all. In the end, no one feels or experiences satisfaction. If an older person moves into a retirement community following this scenario, the likelihood of a successful adjustment is deeply compromised.

Many situations regarding decision-making related to relocating an older family member require and benefit from professional intervention. Professional assistance could come in the form of:

  • helping the older person and his/her family members choose a suitable place
  • mentor and support the family so they can choose for themselves
  • help them sort through the levels of conflict

12 Areas to Consider When Choosing Seniors’ Housing

The following are a number of questions to be used as a working outline in maneuvering through these scenarios. Each requires input and shared conversation with a guide or mentor to monitor and direct the conversations and the powerful emotions they generate. In order to get answers to these question, you (the person seeking housing and/or the person’s advocate) will have to make arrangements for tours and meetings with key people. A trusted professional or seniors’ organization can help you get a list of possible options to choose from. Keep a log of the answers so when decision time comes, you will have some notes to look back on. The questions are not listed in any rank order of importance, but as they come to our mind as we have worked with older adults and families during these potentially troubling and stressful times. As always, take with you what seems most helpful to your unique situation. Note: These questions are written for the person who will be moving. Sometimes a trusted family member or advocate (someone who knows the older person very well) can assist through this process.

1. Costs and how they will be paid for. Remember that the highest cost establishments may not be the most rewarding one. Many have entrance fees that may or may not be refundable in some degree if you leave or pass on. All require fees for their services. Ask if there are any move-in incentives. What is included in the costs (i.e., meals, housekeeping, recreation, etc.). Do they have a free or low-cost “trial stay” option? In the United States, some may take Medicare. In Canada, some of the facilities may be government subsidized. Get the facts down right. Higher cost is not always an indicator of better service and dedication to you. You may also want facts about the establishment’s financial health to guarantee their viability.

2. Location, location, location. How far is it from your family and friends? How close or far are familiar places such as services, restaurants, theatre, clubs, church or synagogue? Are there plans to establish all these in the retirement community once there, or will your time be split? Remember that connection with important people in your life is a definite component of good quality of life.

3. Values and commitment. Ask the management or representative at the establishment about values and commitment to each person. Get this from the people you talk with, not the brochures they send out. While it is good to talk to folks who are available to talk and share their experiences there, they will probably have you speak with the most satisfied members.. Ask for a list of complaints they have received and dealt with. Seek a place that shares your values about what is important in your life and maintaining a high quality of life: continuity here is also important to your quality of life. Ask what procedures are in place to ensure they uphold their commitment to these core values. Ask how these core values are implemented and evaluated. Are they open to improvements? Is there a “Comment Card” system where the residents/tenants can forward their comments and concerns anonymously? Alternatively, what avenues are in place to motivate, celebrate and encourage outstanding service and achievements by staff?

4. Religious affiliation is only part of the equation. Try not to select by religion alone. You may find the system falls far short of meeting your overall needs. While many families share they receive much comfort if the community is of their religion, this does not guarantee a successful placement.

5. Processes in place to ensure a warm welcome and adjustment. What processes are in place to help you or your loved one transition into their system and become part of their “community”? Who is the “go-to” person if there are questions?

6. Supports to help with the adjustment. How will they assist you or your loved one in coping and adapting to their environment? You or your loved one may find it more complicated and anxiety-provoking to move through the process of adjusting there. Who are the staff and what are their qualifications to do this with you or your loved one?

7. Availability of care and counseling after a major life stressor. Many people and families seek out a place following a serious loss to them, such as death of a loved one; illness; financial problems; or diminished ability to provide activities of daily living (ADLs). Attempting to adjust now can strain an individual’s ability to cope and adapt. How will the community provide care and counseling? Does administration view the need for counseling as necessary for enhanced quality of life for some tenants/residents? Is this included in the overall fee? Is it an add-on expense? If counseling is an additional expense (versus an available built-in service), administration does not view this need as a normative cost to them.

8. Counseling and advocacy for relocation concerns. Most people have some degree of ambivalence and uncertainty about such an important move. Who is there to smooth the way and champion their concerns?

9. Counseling for family members. What family counseling services are available to your family? Not all of us have made our amends with our family, dealt with the issues that cause us strife and worry, and resolved any family guilt or anger between members.

10. Regular assessments to assist with adjustment. Are there regularly scheduled assessments of how you or your loved one is coping and adapting? Who are the people and what are their qualifications?

11. Health services. Your health is crucial. How do they incorporate physicians, nursing, and allied health services into their system?

12. Future care needs. What does the facility offer in terms of long-term care needs? Do they adhere to an “aging in place” concept? Meaning, if your health or condition declines, do they continue to support you in their facility, or do you have to move again? Ask them how long you could stay, and what are the reasons you may be asked to leave (“Exit-criteria” or reasons for “eviction”).

We have listed for you 12 areas of concern we feel are important. There are certainly more and some may be equally as important or more important that any on this list. Think for a moment what they might be for you or your loved one. You may be surprised how these questions and concerns bring other ones to the surface. For example, is there a pet involved? Is the pet welcomed?

Reconsidering a Move

What if you began to rethink about your loved one remaining in their home? What services would they need? What services would they accept? Where would the funds come from? Is this just a temporary measure, and if so, would it give everyone time to breathe easier and simply let the person remain in his/her home for a little while longer? Would this be reasonable for a family with many different opinions? Would it be reasonable for an older person who may perceive these service providers as strangers intruding their home further solidifying their sense and awareness of growing frailty and needs?

Seek Professional Consultation

Consider a consultation by a specialist during this challenging time. Seek out someone who has the experience and expertise to guide you and your family with and through this process. Meeting with this person can illuminate a path that you may not have thought of, and provide guidance to see you through.

Many older adults and their families find selecting appropriate seniors’ housing and the accompanying transition somewhat stress-free. Many do not. If your loved one or family is finding this transition difficult, there is help available. There are many fine people in the community to serve you. Start by discussing with your loved one’s mental health professional or doctor. Start by making an appointment.

We wish you and your family well.

Alan S. Wolkenstein, MSW, ACSW
Clinical Professor of Family Medicine (Ret.)
University of Wisconsin School of Medicine and Public Health
Wolkenstein and Associates, LLC
Mequon, Wisconsin, 53092
Alan.Wolkenstein@gmail.com

Angela G. Gentile MSW, RSW
Specialist in Aging

 

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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 two adult children. She is passionate about all things related to Aging Well. For more information, visit: www.AngelaGGentile.com

When Confusion is Confusing: Older Adults and Delirium

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Delirium – Photo Credit: Angela G. Gentile

I have been a geriatric mental health clinician since 2010. One of the most complex and perplexing conditions that I have seen in those 65 and older is delirium. Of the troubling “3Ds” (Delirium, Depression and Dementia) often found in the geriatric population, it is easier for me to identify depression and dementia because of the psychological and behavioural features. To complicate matters, these 3Ds can also overlap.

Delirium (or “sudden-onset confusion”) has it’s own unique features, and it affects people in different ways. It is one of those conditions that doesn’t have a specific laboratory test, and takes at least 24-hours of observation to detect.

Watching a loved one in a delirious state can be very distressing. I have interviewed three women (Mary, Donna and Emma) and I will share their stories of delirium and their older family members. I hope it will help you if you or a loved one happens to be in a similar situation (I have changed all the names to protect privacy).

Delirium is often unrecognized and often misdiagnosed as depression or dementia.

Delirium is a common, serious and frightening brain disorder. It is also reversible in most situations. It can also be life threatening. I have seen how delirium affects people. I remember assessing a woman in a nursing home who was about 80 years old, “picking” at the air. It struck me how inattentive she was. Another man, about 90, was walking around in his apartment complex, oblivious to me as I was trying to get his attention.

Delirium is a medical emergency and requires immediate medical attention.

Delirium is a confused mental state that causes problems with thinking and speaking. A hallmark of the condition is “inattentiveness” with a fluctuating course. The cause of delirium can usually be determined (not always), and it is often medication side effects, infection or some other medical illness that causes a disruption in normal thinking patterns. It usually comes on quite suddenly. It often leaves suddenly as well. In some older people it is harder to detect, especially if the person already has an underlying cognitive impairment such as Alzheimer’s or another related dementia.

Delirium often comes on suddenly. Sudden changes in behaviour or mental functioning requires medical attention.

Some health care professionals also find it difficult to determine if the person is having a sudden-onset of mental problems because of dementia or a medical problem such as a stroke (like in Emma’s story, below). Sometimes it takes a bit of guesswork because there isn’t a “delirium blood test” that can be taken to determine if the person is experiencing delirium.

Health care professionals can be helpful, as in Mary’s story, or unhelpful as in Emma’s story. Delirium can come at the end of life, as you will learn in Donna’s story.

There are three subtypes of delirium: Hyperactive (restlessness, agitation, hallucinations), Hypoactive (drowsy, quiet, confused), and Mixed (both hyperactive and hypoactive).

“The Confusion Assessment Method (CAM) is a quick way to determine if the person in question may or may not be experiencing delirium:

Ask these questions, and answer to the best of your ability (scoring information below):

1. Acute (comes on quickly) change in mental status and fluctuating (tends to come and go) course:

a) Has there been a sudden change in the person’s thinking and usual behaviour?

b) Does the unusual behaviour fluctuate or change during the day? (i.e. tends to come and go, or increase and decrease in severity, periods of clarity mixed with confused episodes)

2. Inattention: Does the person have difficulty focusing attention or become easily distracted? (i.e. has difficulty keeping track of what is being said, can’t concentrate)

3. Disorganized thinking: Is the person’s thinking disorganized or incoherent (doesn’t make sense)? (i.e. rambling speech or irrelevant/unrelated conversation, unclear or illogical (nonsensical) flow of ideas, or unpredictable switching of subjects)

4. Altered level of consciousness: Is the person appearing as anything besides normal alertness? (i.e. vigilant/careful/watchful or hyper alert; lethargic/lazy/sluggish or drowsy but easily aroused, stuporous/lazy or difficult to arouse/awaken/excite, comatose/unconscious or unable to arouse).

Scoring: The diagnosis of delirium requires the presence of features 1 and 2 and either 3 or 4.

Mary’s Story – When Delirium is Diagnosed in Hospital

Mary’s mom and dad are up in years. Her mom is 87 and her dad is 97. Dad is a very healthy and active senior who still participates in many social activities, including driving. Mom has mild-to-moderate dementia. Dad is her primary support, while Mary and her sisters help with caregiving tasks.

One night, Mary stayed with her mom because her mom was experiencing pain due to compression fractures in her back (she also has osteoporosis). Her mom, who is a petite lady (112 lbs.), was taking one Tylenol #3 every four hours. In the night, her mom was unable to follow commands to walk with Mary’s assistance to the commode. She noticed her mom had a “blank look” on her face. Her mom was scared. Things didn’t seem right to Mary. She decided to call 911. The paramedics assessed her and Mom was transferred to the hospital via ambulance.

Delirium often occurs in people with other conditions such as dementia or depression. It is often difficult for health care providers to determine the reason for the changes in behaviour or mental functioning.

While in hospital, pain control was a main issue, so they gave her Percocet and Hydromorphone. These are strong painkillers, both in the opioid class of medications, also referred to as narcotics. Mary explained her mom’s behaviour:

  • Soon after, her mom was shrieking, her eyes looked “wild”, she was paranoid – but couldn’t really say what she was afraid of.
  • Her hearing was super-sensitive (hyper alert), although she had a hearing impairment.
  • She was hallucinating and saw a waterfall coming from the ceiling.
  • Her paranoia escalated and she asked her family members if they were afraid too.
  • Her hallucinations continued and she started picking at imaginary things in the air.
  • She took off her gown and her adult brief.
  • She had periods of lucidity (thinking clearly).

This went on for three weeks.

Mary says it is very hard, emotionally, for her and her sisters to see her mother, who is such a modest person, act in a way that is so out of character. She said she sees occasional glimpses of her mother, then she “disappears.” Her mom knows there is something wrong, but she can’t figure out what it is.

I asked Mary what the medical professionals told her about what was going on with her mom. Mary said it took a couple of days before she could convince them that this was not her mom’s typical behaviour. This was not how her mom usually acts, and it was different from her mom’s dementia-related behaviour. She says the hospital staff were very good, and explained that her mom was experiencing a delirium. They were also suspecting she may have had a small stroke.

Delirium can last days, weeks or months.

I asked Mary what advice she has to give others who are going through a similar experience. She told me she wishes she had advice. She is still trying to figure it out. She goes to see her mom, and they try to be there with her. Sometimes she’s mad at them. Sometimes she cries. Sometimes she fixates on things. She can be good in the morning, then confused in the afternoon. The hospital floor she is on has people that are calling out, screaming, walking the hallways and are agitated. This is not helping matters.

Mary says she advises family members to ask the health care team questions. How long will she be like this? What happens if mom doesn’t improve, then what? Unfortunately, they may not have all the answers either.

Sometimes the cause of delirium is never determined.

Mary said her dad has been very quiet throughout all of this. He visits as often as he can, and talks to her on the phone. He worries about her, but doesn’t talk about it to Mary and her sister.

Mary’s advice is, if your loved one has delirium, educate yourself on the subject. Read books, do some research and talk to the professionals. She says we “figure it out day-by-day, hour-by-hour.”

Both Mary and her sister Wendy say it’s so important to be an advocate for your loved one. She says it’s okay to ask the doctors and nurses what is being planned, or what medications will be given to your loved one. She says numerous people have told her such as her doctor, nurses and friends that she needs to look after herself, too. She says it’s hard. “It’s hard to find time for myself. Sometimes I wake up in the morning and I ‘hit the wall.’ There are some days where I just cry and sleep because I feel so overwhelmed.”

Both Mary and Wendy wonder why the emergency doctors don’t have more insight in terms of the best practices when working with the elderly, especially in terms of medications. They feel geriatric specialists should be consulted more and the emergency doctors may require more training in this area.

A few weeks later Mary is relieved as her mom’s condition is improving. She was transferred to a geriatric rehabilitation ward where she is receiving excellent care. She states her mom’s memory is perhaps a little worse than it was before her hospitalization. She is still a little delirious, and they think she may have had another stroke. But overall, “She is much more like our mom, and that is great.”

Emma’s Story – When Delirium is Not Diagnosed

Oftentimes even health care professionals don’t recognize delirium. Sometimes they don’t listen to family members as well as they should, either. In Emma’s case, her mother Nellie went to a long-term care facility due to complications from a stroke she experienced when she was 78. Her condition resulted in frequent trips to the hospital. Emma looked after her mom for over a year before she went into a long-term care facility.

Emma had negative experiences with both the long-term care facility and the hospital regarding how they handled her mom’s sudden-onset confusion while ignoring the concerns from family. Emma suspects many of the difficulties her mom was experiencing were related to delirium, although a doctor never diagnosed it.

“Hospital visits were painful, difficult, frustrating and sometimes harrowing experiences.”  – Emma

Emma accompanied her mom to the hospital on all occasions. Emma states her mom was “handled poorly once delirium began.” She explained the doctor or nurse would often assume her mom had “full-blown dementia” and they would “no longer consult” with either Emma or her mom regarding reasons for the visit. Doctors seemed to be indifferent for the cause of her mom’s sudden confusion and determined it was dementia-related behaviour. There was never a diagnosis of delirium given to Emma, her mom or other family members.

The delirium-related symptoms that Emma’s mom had while in hospital were:

  • Struggling to get out of the stretcher repeatedly/constantly
  • Seeming to have no idea where she was or why she was there
  • Attempting to get people to help her “escape”; i.e. she would say, “Let’s say we’re going to the washroom and we can leave.”
  • Crying and sobbing; high emotional distress
  • Indications of increased pain

Emma also mentioned what she believes to be misdiagnoses her mother was given. Her mom never had a psychiatric diagnosis in her 80 years. She was surprised to find out that her mother, now in her 80’s, had been diagnosed with schizophrenia and another time she was diagnosed with bipolar disorder by the doctor at the long-term care home.

“Be alert to sudden changes in behaviour triggered by new medication or change in environment or emotional distress and keep a diary to track patterns and common themes related to the changes.” – Emma

A social worker by training, Emma did her research and read up on drug interactions and the impact they could have on her mom’s mental health. She began looking at the causes of sudden-onset behaviour changes and discovered delirium as a possible explanation.

Emma suspects it was some of the psychotropic or mind-altering drugs that were the cause of her mother’s delirious episodes. Medications that were in the antidepressant, benzodiazepine/anxiolytic, antipsychotic and hypnotic categories were all used both effectively and ineffectively in her mom’s case. Her mom found one of the anxiolytic and hypnotics helpful, but not harmful, in the end. It’s also important to note that some pain medications such as morphine and oxycodone (also called narcotics) can also cause delirium (as in Mary’s story, above).

Emma states throughout these experiences it’s difficult for her to put her feelings into words, but the experiences stay with her. “I felt helpless, useless, ineffective, frustrated, maybe even a bit hopeless about our system of care.” The other family members felt overwhelmed and torn in terms of what the doctors were saying and how they directed care. The family members found it difficult to vocalize their legitimate concerns. Ultimately, the family did not want to “make a fuss” and felt confused, distressed and frustrated.

“If you ever find yourself in a similar situation, to seek out a professional who specializes in studying, treating and diagnosing delirium.” – Emma

Emma advises if you have a loved one in a facility, or are considering a move to one, it is “critically important to know the possible side effects and adverse events related to psychiatric drugs; and to know the rate and use of psychiatric medications” in long-term care centres or residential care facilities.

Professionals such as geriatricians (doctors who work with adults aged 65 and older) and geriatric psychiatrists are two types of specialists who can be consulted to help sort out behavioural and mental health problems in older adults. Geriatric Mental Health Clinicians, or those who specialize in psychogeriatrics are also helpful in these situations.

Donna’s Story – Delirium at the End of Life

Delirium is common at the end of life. Donna had experience with knowing three people who became delirious. She said the behaviours were consistent in all three of them: “Extreme agitation, taking sheets and clothes off, in and out of bed and expressing the need to go home.”

Donna lost her dad a few years ago. Near the end of his life, he experienced delirium. The symptoms he experienced were heightened restlessness and agitation, pulling at his sheets and clothing, and constantly trying to get out of bed to “go home.” Sometimes he spoke incoherently and often he believed he was in a different time in his life. He was a firefighter and also used to sell cars.

Donna explains, “One morning he asked me if that guy had come to pick up his keys for his new car. When I told him he had, he settled down. Another day he was fighting fires and that is how it went. Sometimes we could not understand what he wanted if his speech was not clear and had to do our best to figure it out.”

The following is Donna’s advice to others going through this experience:

“I would say to just go with what is happening depending on the circumstances and do not make the person feel bad for whatever they say. If they are in the past, you need to be in the past, this is not a time to create more anxiety for the person. Also, recognize that even though they are delirious, they are still often aware of what is happening around them.

One time we thought my dad was not really with it and an old song came on the radio. We were all trying to figure out who sang it and he suddenly blurted out ‘Patsy Cline.’ This type of thing happened often and showed me how aware a person experiencing this still is.

Even when he seemed to be in a deep sleep or delirious, if my mom would take her hand away, his hand would begin to move around looking for her. We saw many signs that dad was still there even when in and out of delirium or coma. It is so important to be there for them and continue to do the things that make them comfortable.

This is not a journey we wanted or that anyone wants, but none of us would have missed taking it with dad for anything. We experienced great sadness, moments of joy, tears and laughter. I would tell anyone to allow themselves to fully engage in the process and do not be afraid to laugh – it is not inappropriate and not an insult to your loved one.”

What I Have Learned About Delirium

Delirium can last for days, weeks or months. It can recur in people who have had delirium in the past. Medications, illnesses (such as a urinary tract infection), dehydration, or sleep deprivation are some of the risk factors. When delirium is superimposed onto a dementia, it can also be difficult to sort out what is causing the confusion.

Evenings can be more difficult for a person with delirium. They may be more afraid or agitated for example (also called Sundowning or late-day confusion). Being with familiar people and objects can help, but it won’t make the symptoms go away. This can be very hard on family members.

When a person has delirium, it is very important to try and determine and remove what caused the delirium in the first place. This is not always possible. The delirium can clear just as quickly as it came, without any notice. It is not contagious, but I see it like a “little intruder” that invades the brain for a bit, causing all kinds of problems. Once the intruder is eliminated, or “burns out,” then things get back to normal. Sometimes there is a bit of a step-wise decline and there is a bit of a change in the person’s new normal, or baseline functioning. The person plateaus in terms of his or her thinking and functioning, but at a slightly lower level. Sometimes s/he gets right back to where s/he was to begin with.

Recovering from Delirium

People who are delirious need to be taken off medications that could be causing the problem. They need to be kept comfortable, safe, hydrated with proper fluids and fed with proper nutrients. If they are dehydrated, intravenous fluid administration (and electrolytes) may be required until they can tolerate oral rehydration (drinking by mouth). Make sure they have their eyeglasses, hearing aids and someone to interpret if required. They need to get up and walk around and socialize. They need frequent reminders of their location, and orientation to the time. Involvement of friends and family is important. They need to sleep. Their sleep patterns may be disrupted, so they will need daylight and activity during the day to help keep them stimulated (as tolerated). They may benefit from relaxation techniques such as music, massage or breathing exercises. They will need lots of tender loving care and close supervision. Encourage them to safely walk and do self-care with assistance if required. Aim for a normal sleep-wake cycle, having them sleep in a quiet room with low-level lighting. Discourage daytime napping. Offer a non-caffeinated warm drink at bedtime. Treat pain. It can last days, weeks or months.

According to the 2012 Beers Criteria, the following list of medications should be avoided, especially for those older adults who are already delirious or at risk for delirium:

  • All Tricyclic Antidepressants
  • All Anticholinergic drugs
  • Benzodiazepines
  • Chlorpromazine
  • Corticosteroids
  • H2-receptor antagonist
  • Meperidine
  • Sedative Hypnotics
  • Thioridazine

A low-dose of an antipsychotic medication may be prescribed temporarily to decrease severity and duration of delirium. Antipsychotics should be reduced after the severe symptoms of delirium have resolved with discontinuation as the ultimate goal (Forsberg, 2017).  However, a study on antipsychotics and those who are palliative (dying) revealed they can increase the symptoms of delirium (Agar, Lawlor & Quinn, 2017).

Unfortunately, delirium can increase the risk for developing dementia. Therefore, it is important to diagnose and treat as soon as possible. Delirium can also increase the risk for death.

Delirium prevention in older adults includes keeping on top of risk factors that may trigger an episode. Medication side effects, withdrawal, surgery and illness are all factors that can lead to delirium. The symptoms of delirium can be lessened by removing the cause, supporting good sleep and nutrition habits, helping the person remain calm and orientated, and helping prevent medical problems or complications. For older people who need to go to the hospital, this brochure on Delirium that may help.

A special thank you to the three women who shared their stories here in hopes of helping others.

Angela G. Gentile

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Angela G. Gentile, M.S.W., R.S.W. is a clinical social worker and author of the books, “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 Collectino that Sells,” and the “Dementia Caregiver Solutions” app for iPhone and iPad. She lives in Winnipeg, Manitoba with her husband, daughter and two lovable dogs. She is passionate about all things related to Aging Well. For more information, visit: www.AngelaGGentile.com

For further information:

Delirium – Mayo Clinic

For more information on delirium at the end-of-life, check out this article on Mental Confusion or Delirium from cancer.net.

For Health Care Professionals:

Canadian Coalition for Seniors’ Mental Health – Tools for Health Care Providers: The Assessment & Treatment of Delirium in Older Adults and the Delirium Tool Layout.

Clarifying the Confusion About Confusion: Current Practices in Managing Geriatric Delirium

Delirium Treatment and Management

Delirium Update for Post Acute Care and Long-Term Care Settings – A Narrative Review by Martin Forsberg (2017)

Delirium in Elderly Adults: Diagnosis, Prevention and Treatment

The “Confusion Assessment Method” is a fairly easy and commonly used tool that has been written in 14 different languages. It is often used by healthcare professionals.

Efficacy of Oral Risperidone, Haloperidol, or Placebo for Symptoms of Delirium Among Patients in Palliative Care: A Randomized Clinical Trial by Agar, Lawlor and Quinn (2017).