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

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

 

 

 

“Improving Your Memory” –– A Great Handbook for Those Concerned About Memory Changes (Book Review)

What do you get when two clinical social workers who work in a geriatric centre write a handbook on how to improve your memory skills? A fine little guide for helping older people who are concerned about the changes in their memory!

Janet Fogler and Lynn Stern team up in “Improving Your Memory: How to Remember What You’re Starting to Forget” (2014) in this fourth edition. Originally published in 1988, these social workers have created the book that I have been looking for. In this fourth edition, they have included the smartphone and other technologies that are helpful to us as we manage our daily tasks and are challenged by our aging minds and bodies.

The paperback (168 pages) is medium-sized and is packed with real-life stories and examples to help the reader understand the concepts. There are also quizzes throughout to help the reader apply the knowledge learned (to help one remember!). It is divided into four parts:

  1. How memory works
  2. How memory changes as we age
  3. Factors that affect memory
  4. Techniques for improving your memory

I cracked open the book and dived into section four, as I was eager to see what techniques the authors were recommending. They offered some great ideas, and even ones I had not heard of before. One of them had to do with switching your ring or watch to your other hand or wrist, as an indicator that you had something to remember. It is much like the classic “tying a string around your finger” trick. I found some of the mental exercises fun and a little tricky, and I enjoyed trying out some new skills to help me remember things. The one example for myself that comes to mind is when I am attending an appointment and I have to park in a large parkade. I will use an “active observation” technique so I won’t forget where I left the car!

The first three parts of the book are very easy to understand and come with an illustration of “A Model For How Memory Works.” For us visual learners, these kinds of diagrams are helpful. Encoding (getting something to stick) and retrieval (being able to recall something) can become a little more difficult as we get older, for a variety of reasons. The authors explain, in simple language, why these things happen and how we can try to combat them. Whether our forgetfulness is due to stress, grief, depression, poor concentration, medications, or illness, memory problems can cause added stressors. The authors give some good advice in the appendix on Alzheimer’s Disease and Related Dementias; “What is good for your heart is also good for your brain, so monitoring heart disease, diabetes, stroke, high blood pressure, and high cholesterol is important” (page 142).

I was surprised to learn the book doesn’t talk about “mild cognitive impairment” and the prevalence rates of Alzheimer’s disease and other related dementias. Knowing that the risk of Alzheimer’s disease increases with age is important to know, but not knowing the level of risk does not allay any fears or concerns one may have. (The World Health Organization estimates, of those 60 and over, 5 to 8 people per 100 will develop dementia.)

I also noticed the absence of the terms “mindfulness” and “meditation,” as those two terms are used quite often in most of the current brain health literature I have been reading. Fogler and Stern mention how alcohol can negatively affect your memory, but they omitted any mention of drugs. Interestingly the nutrition section has no reference to supplements. I also observed God, higher power, and spirituality are not discussed.

Overall, a highly recommended guide and workbook for those who want to learn about: how the brain stores and retrieves information (in our “working” and “long-term” memory); what happens to the aging brain; what may cause memory problems; and tips and techniques on how to maximize your chances of remembering things. I’ll leave you with these two tips: “Much of what is called ‘forgetting’ is a lack of paying attention” (p. 137); and “Study after study shows that increased fitness levels result in improvement on cognitive tests” (p. 64).

Angela G. Gentile, MSW, RSW
Author/Specialist in Aging

www.AngelaGGentile.com

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

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

 

 

 

Alzheimer Caregivers Need Help, Too

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Courtesy of the Fort Frances Times

I enjoyed presenting at the Alzheimer Society Forget Me Not Dinner in Fort Frances, Ontario. It was my first out-of-town request to be a guest speaker. It was a sold-out crowd and they raised over $4,000.00.  Duane Hicks did a great job of covering the story. The only thing I would like to correct is that I have two children, a son (Lorenzo) and daughter (Simone). Lorenzo is the app developer for the mobile app, “Dementia Caregiver Solutions.”

 

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Courtesy of Fort Frances Times/Duane Hicks

Above is a picture of my husband, Agapito, and I getting ready to dig in! He was a big help to me as he drove the whole way (4 hours one way). He was my official assistant during my presentation as he advanced the slides for me.

If you would like more information on my services or products, please check out my website, www.AngelaGGentile.com.

Sincerely,

Angela G. Gentile, MSW, RSW

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