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DEMENTIA/ALZHEIMER’S: DARI seminar # 2

Advice to Alzheimer’s Caregiver Newbies

Webinar Presentation By: Michael A. Horvich

INTRODUCTION

This presentation is being made for DARI at Homethrive, to support caregivers of friends or family members who are living with Alzheimer’s.

I am grateful to Homethrive for giving me this opportunity and for the work they do to support caregivers in all areas of health and mental well-being.

The presentation is based on an article I wrote called: “Advice to Dementia /Alzheimer’s Caregiver Newbies.”

It is based on my experiences with my husband Gregory, during his 12 years of living with the disease. He passed seven years ago.

On my web site, www.horvich.com … scroll down to Homethrive and you can find the text of this presentation, the full article on which it is based, references and resources, and a series of motivational posters about living with Dementia.

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The story I am about to share with you is a very PERSONAL one. I’m comfortable with crying in front of you, however it is very difficult to cry … and talk at the same time.

So, if I get choked up, I will pause, take a few deep breaths, and be right back, probably before you even notice I have gone.

GREGORY, my husband of over 41 years, was diagnosed with DEMENTIA, most likely ALZHEIMER’S, in the 29th year of our relationship. He was 55 years old.

Together, we were on the Dementia Journey for 12 years.

Let me say that I am NOT here today as an EXPERT in the field of Dementia and Alzheimer’s … but rather as someone who has EXPERIENCED it … DIRECTLY and INTENSELY.

Let me tell you a little about me …

I hold a Bachelor’s Degree in Liberal Arts, a Master’s Degree in Education, and an Advanced Certificate in Education Administration and Supervision.

I am an educator, have worked with children in regular education as well as children with special needs.

I was an administrator for a Talented & Gifted Education Programed & taught Jr High Spanish.

I have taught a number of university level education courses and seminars.

I have been retired for 25+ years but have been more than active as an educator, speaker, writer, poet, blogger, actor, opera supernumerary, children’s museum curator, flea circus ringmaster, and Dementia /Alzheimer’s caregiver partner.

• • •

Next, let me tell you a little bit about Gregory.

GREGORY earned a Bachelor’s Degree from Wesleyan University in Connecticut & received his Master’s Degree from Harvard University in Architecture, with Phi Beta Kappa recognition.

He ran his own high end architecture and interior design firm and served as the architect of record for renovations at the Baha’i National Shrine in a suburb of Chicago, Wilmette, Illinois.

Gregory was a writer, an artist, was well versed in music and art history, was a concert level pianist, spoke French, and won many awards for his architecture and interior design skills.

• • •

As I begin this presentation, let me say … that we cannot force someone to hear a message they are not ready to receive, but we must never underestimate the power of planting a seed!

Hopefully this presentation will speak to you in some ways and also plant seeds for the future on your journey as a caregiver for … and loving someone living with … Dementia / Alzheimer’s.

It may seem overly simple, but my message to you today is “You have the ability to choose.

CHOICE is in your hands and you have the ability to CHANGE.

This is important because as a caregiver partner, as the person who does NOT have Dementia/Alzheimer’s, you can change.

The person living with Dementia/ Alzheimer’s cannot.

Much of what you experience as a caregiving partner is or will be frustrating, frightening, overwhelming, confusing, physically taxing, and many other difficult adjectives I could use.

But if you look closely, if you allow yourself to be calm and to sit with your emotions, you will see what lessons they are trying to teach you, hopefully accepting the notion that it is your choice to change, there are also many gifts to receive as well!

Some of those gifts include:

Knowing you have helped a fellow human-being weather one of the worst possible storms one can live through and with which to die,

Learning how to give love without qualification if only because the person with Dementia cannot always return the favor,

Being grateful for and seeing the beauty in the smallest of interactions and experiences,

Becoming more aware of your own strengths and weaknesses,

And discovering what really matters in life and in your interactions with others

• • •

If your relationship with the person living with Dementia has earlier been a good one, supporting them might be a little easier.

If the relationship has been a rocky one, it will be more difficult … if only because you must first overcome your negative feelings and emotions and the baggage which you have carried from the past.

Sometimes a difficult relationship can turn into a loving one and sometimes a loving one can turn into a constant battle.

Relationships will be different if the person living with Dementia / Alzheimer’s is your parent, your sibling, your spouse, or a friend.

Gregory always trusted me and differed to my decisions on his behalf.

He was usually calm and peaceful.

We were both very fortunate in this.

Not everyone is.

I have a friend whose husband strikes out at her, not because he is a violent person but due to his frustrations and lack of ability to no longer use language to express himself.

He was not by nature an abusive person but it is the best he can do to communicate his discomfort, fears, confusion, frustrations.

That doesn’t make it OK, just a little easier for the caregiver partner to understand and with which to deal.

AGAIN, you CAN change, they CANNOT!

You can change anger to love, fear to gratitude, anxiety to calmness, frustration to understanding, confusion to order, and I could go on.

• • •

Scott Stabile; an inspirational, self-help writer and speaker; has said:

We have more control over our thoughts than we tend to believe. If a movie you don't like is on TV, you change the channel.

If a song you can't stand is on the radio, you change the station.

And yet, when we're thinking thoughts that make us feel like crap, we often keep thinking them.

We lock ourselves in to the misery.

It is possible to change the channel on our thoughts.

You can tune to a station that feels better, that is rooted in love or creativity or beauty or anything that feels more uplifting.

Why not practice at it?

Why not play with giving ourselves more good-feeling thoughts as often as possible?

The mind is powerful, and it can feel impossible to shift its trajectory, but it's not impossible.

In fact, it's entirely possible, with focus and intention.

That doesn't mean it's easy, but misery isn't easy either. <