© 2020 Mercy Medical Center

August 2020

901 8th Avenue SE | Cedar Rapids, IA 52401 | (319) 221-8866

fcgc@mercycare.org | www.familycaregiverscenter.org

Centered News

Thanks to COVID-19

A New Era is Beginning at the Caregivers Center

Amid the devastation, the isolation and the change that COVID-19 has caused, some positives have surfaced at the Caregivers Center. The closing of the Center, except for Zoom support groups and phone and email interactions with caregivers, gave Center Manager Abby Martin, Office Coordinator Kathy Krapfl and me, an opportunity to take the time to stop and look back at the almost five years the Center has existed. In looking back, we began to think about what IS the purpose and the essence of the Family Caregivers Center? We have begun analyzing the results of the recent Caregivers Satisfaction Survey with the Kitchen Cabinet-the planning group of the Caregivers Center. Our goal is to determine what we believe is the essence of the Caregivers Center. We are still in the process of deciding what changes to make We took our initial thoughts to the Kitchen Cabinet, the planning group of the Caregivers Center. The results of the recent Caregivers Satisfaction Survey have been compiled and are being studied as part of our review and determination of what the essence of the Caregivers Center. We are still in the process of determining the changes to be made. As soon as we began offering events virtually, it occurred to us that that the support groups, or any other educational events we offered by Zoom, would be available to long-distance caregivers. We have decided to continue the Zoom option even after we are able to resume in-person sessions at the Center. Then last week, in a conversation with Tim Charles, President & CEO of Mercy Medical Center, it became clear that the Zoom option means that caregivers from all over the country can take advantage of the services offered here! THAT IS BIG! We want to make sure that our services that can be offered by Zoom are available to anyone who wants to participate. That's where you come in: please tell any caregiver you know who lives outside our metro area, that all they need to do to join anything we offer via Zoom, is to let us know their contact information so we can send information, about how to connect. You will also note that we are expanding our newsletter and event schedule to give you more information. You will continue to find the calendar and a description of the events we are offering and a timely article providing information you can trust from our editor, Dot Hinman. But you will also find lots more – an “Ask Abby” column, a column devoted to dementia, information about what is happening at the Caregivers Center, highlights regarding our volunteers and what they are doing, a book review and other items hopefully of interest to you. -Kathy Good, Director, Family Caregivers Center

Thank you for your support!

The Family Caregivers Center is donor-funded.

Gifts help support programming and

respite for caregivers.

Long distance caregivers can enjoy our events by Zoom. Feel free to share

meeting information with others. The Center

can also email the meeting links to

interested parties.

DID YOU

KNOW?

The contemporary view of dementia - as defined by Dr. Allen Power - is “a shift in the way a person acts upon the world around him/her.” Judy Cornish, author of Dementia with Dignity, provides additional clarity. She says people living with dementia:

— Have a loss of memory and rational thought processes — Exhibit behaviors that are symptoms of emotional distress — Retain intuitive thought processes.

What Cornish has learned from her work resonates with me. Dave Good, my spouse, lived 12 years after he was diagnosed with dementia and I was his caregiver. What can you do with Cornish’s information as a caregiver? She says:

— Never correct or ask a person living with dementia to join you in your reality — Focus on what the person living with dementia is experiencing and identify his/her feelings — Look for the intuitive thought process that has been retained.

When I was caring for Dave I didn’t have this information, but as I was reading Cornish’s book, a past situation with Dave came to mind:

One day when I came home from work, Dave told me that there had been children in our house. I didn’t tell him that I didn’t think there had been, said, “Really, what were they doing?” “Messing around,” he said. “Did they hurt you?” I asked. “No, but they wouldn’t leave,” he said. “Wow, that must have been frustrating. I am glad they didn’t hurt you. We’ll have to figure out something to make sure they don’t get in again and mess round.”

I didn’t correct him. I focused on what he was experiencing and the feelings I was sensing he had. He knew kids shouldn’t be in our house messing around. In the August Take 10 sessions, we will talk more about how to use Judy Cornish’s ideas.

-Kathy Good Director, Family Caregivers Center

Receiving a Dementia Diagnosis

If you are feeling anxious and overwhelmed by the news that your loved one has received a diagnosis of dementia, please let me offer some advice: First, remember it is a journey that moves slowly at first, with most things staying the same. Take this time to get powers-of-attorney for healthcare and financial decision-making in place. Talk to your loved one about what is important to them and how he/she wants to be assisted when help is needed. Don’t forget to also talk about what is important for you as the caregiver!

. Second, establish a habit of taking care of yourself: meditation, massages, lunch with a friend, etc. Find little ways to relax and be kind to yourself. Make fun and laughter a part of each day. Take walks together. Most importantly, focus on the person with affection, not on tasks. It won’t matter to anyone how clean your house is, but you will forever remember the affectionate hugs. Third, take time to learn as much as you can about dementia. Information that you can trust is available at the Center. I knew nothing about dementia and had never been a caregiver. I wish I had been better prepared. One thing that was hardest for me was asking for help. I paid the price as my husband’s dementia progressed and my sleep deprivation made every day harder and harder. I thought I COULD and SHOULD handle everything. It would have been so much better for both of us if I had asked for help. Lastly, don’t look at the diagnosis as the end of life. Your life and the life of the person who has been diagnosed with dementia will change and the “new normal” may happen many times. There will be wonderful moments that will create memories and times that you will cherish. You will have the satisfaction of solving problems, some of which, in retrospect will be funny. Remember to tell the person you are caring for how important and loved he/she is and the difference they have made in your life. Remember that you can do this! You are awesome!

-Dot Hinman, Editor, Centered News

© 2020 Mercy Medical Center

The Caregivers Center has had contact with 1,157 caregivers since it opened December 17, 2015 with 629 of these caregivers caring for someone living with dementia. Beginning this month, Centered News will contain a new column – Let’s Talk Dementia.

© 2020 Mercy Medical Center

Dear Abby,

Somebody told me that my husband, who is living with dementia, may be experiencing sundowning. Is he? What is sundowning? And what do I do about it?

From, Sally

Dear Sally,

Sundowning is a term that is sometimes used to describe how a person living with dementia becomes uncomfortable, restless, or anxious in the late afternoon or early evening. If a person living with dementia worked outside of the home at one time, returning home was a time of transition (ending work, going home, changing clothes, starting dinner, etc.). Even if they did not work outside of the home, early evening may still have been a time of transition. For the person living with dementia, as the sun goes down, it may trigger the thought that this is a time to “do something.” Because of an inability to remember what one does at this time, which is frustrating, the person may exhibit restlessness, anxiety and act uncomfortable. If your husband is exhibiting signs of frustration and anxiety in the late afternoon or early evening, try not to personalize it. See it as a sign of needing some assistance to make the transition. Plan to spend some time with him versus focusing on tasks to be done. Recognize the feelings you see and let him know you sense the frustration he is feeling. Go for a walk around the block, have a snack, or make a phone call. Do something that he will like. If it is the time of year when it is getting dark Outside earlier, turn on lights. People living with dementia sometimes have difficulty distinguishing objects where shadows exist; that may make the frustration and anxiety worse. Know that no matter what you do, it might not always work. When you try and it doesn’t work, express your regret: “I am so sorry that this is such a frustrating time for you. I am trying to think of things to help, but I am not being very successful. Come to the kitchen with me and let’s listen to music while I prepare dinner.”

This well-organized book is written for the caregiver trying to balance caregiving with a full-time job. The author, Amy Goyer, has successfully done this. She approaches caregiving with the skills of a well-seasoned manager, beginning with a “360 assessment” of her own situation and

that of her parents. Goyer shows how to use this assessment to develop a caregiving plan to organize needs and resources, sharing potential shortfalls for both. She shares the importance of putting together a team, involving family and sharing tasks. She also shares ways to talk to your employer and maintain your own career while caregiving. The book ends with an extensive appendix full of possible resources, checklists and useful websites. The book is an outstanding example of how to realistically assess a situation, identify problem areas as well as potential resources, and recognize that any plan needs to be adapted as situations change. This amazing book crams lots of information into a small volume. I would suggest adding this to your “must buy” list if you are balancing work and caregiving. This book is available at the Family Caregivers Center.

-Dot Hinman, Editor, Centered News

Book Review:

Juggling Life, Work, and Caregiving by Amy Goyer

What’s New?

“Ask Abby” is a column dedicated to answering caregiver questions. If you would like to submit a question, email it to fcgc@mercycare.org.

The Caregiver’s Lounge has been rearranged to allow for social distancing while meeting one-on-one with caregivers.

© 2020 Mercy Medical Center

August 2020 Events Sun Mon Tue Wed Thu Fri Sat

1

2 3 Transitions Out Series (1 of 4) 3 - 4:30 p.m.

4 Male Caregiver Coffee 8 - 10 a.m.

5 Transitions Out Support Group 2 - 3:30 p.m.

6

7

8

9

10 Transitions Out Series (2 of 4) 3 - 4:30 p.m.

11 Male Caregiver Coffee 8 - 10 a.m.

Mindful Caregiver Support Group 1:30 - 3 p.m.

12 Take 10: Dementia with Dignity 10 a.m.

Call-In Support Group 1:30 - 3 p.m.

13

Veterans Affairs Q &A 9 - 10 a.m.

14 15

16

17 Transitions Out Series (3 of 4) 3 - 4:30 p.m.

18 Male Caregiver Coffee 8 - 10 a.m.

19 Take 10: Understanding Anosognosia 10 a.m.

20 Conversations with Lauren 5 - 6:30 p.m.

21 22

23

24 Transitions Out Series (4 of 4) 3 - 4:30 p.m.

25 Male Caregiver Coffee 8 - 10 a.m.

Mindful Caregiver Support Group 1:30 - 3 p.m.

26 Take 10: Reality in Dementia 10 a.m.

Call-In Support Group 1:30 - 3 p.m.

27

28

29

30 31

To Register:

Call (319) 221-8866 or email fcgc@mercycare.org.

3 - 4:30 p.m.

Transitions Out Series (Session 1 of 4) After the person you have been caring for dies, transitioning out of the caregiver role can be challenging. The Family Caregivers Center offers a four-week series focusing on the spiritual, financial, and emotional aspects of re-establishing your identity. Mercy Chaplain Tammy Buseman, and Chris Carmen, Family Caregivers Center volunteer, will facilitate discussion. Registration required.

888-788-0099 | Meeting ID: 918 9402 0876 | Password: 513661

https://zoom.us/j/91894020876?pwd=TmFWdlZyZ1V5TEpSaHFxcmFwT3d2dz09

Tues

4th

8 - 10 a.m.

Male Caregiver Coffee A Zoom support group for male caregivers. Come share your story, network with other male caregivers, and learn caregiving tips. No registration required.

888-788-0099 | Meeting ID: 980 8556 5649 | Password: 412365

https://zoom.us/j/98085565649?pwd=RXhyMXg5VUNhR2lrMEsxUEZJTFhYUT09

Mon

3rd

Wed

5th

2 - 3:30 p.m.

Transitions Out Support Group A Zoom support group open to those who have participated in the Transitions out of Caregiving Series following the death of the person they were caring for.

888-788-0099 | Meeting ID: 959 9699 8444 | Password: 603760 https://zoom.us/j/95996998444?pwd=dDlDdUNTaExrKzl6RWhsSVNSRGZOdz09

© 2020 Mercy Medical Center

Mon

10th

3 - 4:30 p.m.

Transitions Out Series (Session 2 of 4) 888-788-0099 | Meeting ID: 917 7366 8178 | Password: 875217

https://zoom.us/j/93405160399?pwd=WkdBcHhJKzRLTXo3WGRkUWVzL2Jidz09

Tues

11th

8 - 10 a.m.

Male Caregiver Coffee A Zoom support group for male caregivers. Come share your story, network with other male caregivers, and learn caregiving tips. No registration required.

888-788-0099 | Meeting ID: 924 4709 7735 | Password: 960026 https://zoom.us/j/92447097735?pwd=ZEtpOXc4dkp4bUFOcGZTNnpLSElndz09

Tues

11th

1:30 - 3 p.m. Mindful Caregiver Support Group A Zoom support group open to those who have participated in the Mindful Caregiver Book Study.

888-788-0099 | Meeting ID: 971 7790 0433 | Password: 359821 https://zoom.us/j/97177900433?pwd=SDUrbUhNc0RkbFk5a0pDTWxVaGU2UT09

Wed

12th

10 - 10:10 a.m. Take 10: Dementia with Dignity Take ten minutes via Zoom to join Kathy Good and Abby Martin and learn how to embrace Judy Cornish’s approach to Dementia with Dignity. Learn seven tools that can make a difference in caring for someone living with dementia. No registration required.

888-788-0099 | Meeting ID: 971 9070 4820 | Password: 573239 https://zoom.us/j/97190704820?pwd=ZUw3dERCdXErdUxSNUZ6WjFiMWo1Zz09

1:30 - 3 p.m.

Call-in Support Group A Zoom support group offering connection with other caregivers in like circumstances. Find support as you share your story and hear from others. No registration required.

888-788-0099 | Meeting ID: 971 9070 4820 | Password: 573239 https://zoom.us/j/97190704820?pwd=ZUw3dERCdXErdUxSNUZ6WjFiMWo1Zz09

Wed

12th

Thurs

13th

9 - 10 a.m.

Veterans Affairs Q &A Is the person you care for a Veteran or spouse of a Veteran? Linn County Veterans Outreach Coordinator Suellyn Parson will be available via Zoom to answer questions and discuss Veteran’s benefits. No registration required.

888-788-0099 | Meeting ID: 973 2134 1695 | Password: 120306 https://zoom.us/j/97321341695?pwd=djUwc244Vk85bHhpN1Btb1NIY3ZLQT09

Mon

17th

3 - 4:30 p.m.

Transitions Out Series (Session 3 of 4) 888-788-0099 | Meeting ID: 914 1108 7800 | Password: 858193

https://zoom.us/j/91411087800?pwd=ZXVpU1JCNmQ0WEd0amhqRWtuWG9HQT09

Tues

18th

8 - 10 a.m. Male Caregiver Coffee A Zoom support group for male caregivers. Come share your story, network with other male caregivers, and learn caregiving tips. No registration required.

888-788-0099 | Meeting ID: 936 1124 2415 | Password: 388210 https://zoom.us/j/93611242415?pwd=cFhxRTc3Y245RkNiWGhsUHI4VDBhUT09

Wed

19th

10- 10:10 a.m. Take 10: Understanding Anosognosia Take ten minutes via Zoom to join Kathy Good and Abby Martin as they discuss anosognosia, a condition in which a person living with dementia doesn’t think there is a problem. Come and learn what to do if this is impacting your caregiving for a person living with dementia. No registration required. 888-788-0099 | Meeting ID: 950 1781 3019 | Password: 751739

https://zoom.us/j/95017813019?pwd=L2puZG1JeVhaay9FU2xPcTVla3hlQT09

Events during COVID-19:

To ensure caregiver safety and to practice social distancing, all Family Caregivers Center group events will be held via Zoom until further notice. Events are subject to change in light of the current conditions.

© 2020 Mercy Medical Center

How do I use Zoom?

To participate in a meeting, you can call in with your phone or use your desktop, tablet or smart phone app.

Joining by Phone: • Dial the number and when prompted, enter the meeting ID.

Joining by Video: • To use Zoom to video conference from your desktop, create a free account by going to

https://zoom.us/signup and follow the step-by-step instructions. To use a tablet or smart phone, download the Zoom app from the App Store and set-up an account.

• To join a meeting, click on the link provided or copy the link in your web browser. You can also click on “Join A Meeting” and enter the Meeting ID and password.

Please remember to keep your device muted while others are talking to avoid background noise.

Thurs

20th

5 - 6:30 p.m. Conversations with Lauren Couples with one partner living with dementia are invited to socialize and share with other couples the third Thursday of the month. Join via Zoom as we discuss the challenges of coping with dementia and other caregiver-selected topics. Both caregivers and care receivers are invited. No registration required.

888-788-0099 | Meeting ID: 932 0617 5164 | Password: 053495 https://zoom.us/j/93206175164?pwd=ZFhpUW5NVGV1ZitYa1VWS29wZzlMZz09

Mon

24th

3 - 4:30 p.m.

Transitions Out Series (Session 4 of 4)

888-788-0099 | Meeting ID: 996 1399 5128 | Password: 823716

https://zoom.us/j/99613995128?pwd=WVRJYmE0ZXBDamFLdXBRZGkwZzhnZz09

Tues

25th

8 - 10 a.m.

Male Caregiver Coffee A Zoom support group for male caregivers. Come share your story, network with other male caregivers, and learn caregiving tips. No registration required.

888-788-0099 | Meeting ID: 941 4018 2004 | Password: 328747 https://zoom.us/j/94140182004?pwd=d0dzczYvd3RQb25nY0JmV0Z2TzBMQT09

Tues

25th

1:30 - 3 p.m. Mindful Caregiver Support Group A Zoom support group open to those who have participated in the Mindful Caregiver Book Study.

888-788-0099 | Meeting ID: 939 8125 8456 | Password: 532204 https://zoom.us/j/93981258456?pwd=U0R6Rmt5azQ2U2VtbkpHTCs4RU5BUT09

Wed

26th

1:30 - 3 p.m.

Call-in Support Group A Zoom support group offering connection with other caregivers in like circumstances. Find support as you share your story and hear from others. No registration required.

888-788-0099 | Meeting ID: 937 3259 7847 | Password: 357042 https://zoom.us/j/93732597847?pwd=VmxaMFZwcXd2Y0xLaVR6RTlabXd6QT09

Wed

26th

10 - 10:10 a.m. Take 10: Reality in Dementia Judy Cornish suggests in the book Dementia with Dignity, not to argue or clarify the reality of people living with dementia. Take ten minutes via Zoom with Kathy Good and Abby Martin to learn how to join the reality of the person living with dementia. No registration required.

888-788-0099 | Meeting ID: 992 2775 0102 | Password: 823104 https://zoom.us/j/99227750102?pwd=V1NmK1ZUNFF6cHVySGZNYWtXd1NOdz09

One-on-One Meetings

Since the Caregivers Center opened, one-on-one meetings have been available for caregivers who wish to talk about their specific situation. During a one-on-one meeting with a caregiver, the trained volunteer or staff person:

• Listens to understand the caregiving situation (no two situations are the same)

• Provides emotional support (volunteers and

staff either are or have been active caregivers) • Helps determine the caregiver’s strengths

and what may be causing distress • Provides education about the chronic

condition of the person being assisted • Answers questions • Assists with completing applications for a

variety of types of assistance • Explains why caregivers need breaks and the

options for getting one • Helps make connections with community

resources • Discusses clues that help more, or different

help is needed and helps determine what might be appropriate

• Provides ideas to ease transitions • Helps the caregiver determine a plan and the

next steps to be taken • Suggests meaningful activities for the person

being assisted • Facilitates communication with family

members • Describes the Family Caregivers Center and

the resources available at the Center If you, or a caregiver you know, is interested in scheduling a one-on-one meeting please call the Caregivers Center at 319-221-8866 or send an email to fcgc@mercycare.org.

This newsletter can be emailed or found at www.familycaregiverscenter.org.

If you would rather receive the email version

or want to be removed from this mailing, please contact us at 319-221-8866

or fcgc@mercycare.org.

After growing up in Chicago, I first fell in love with the Cornell College campus and then with the love of my life, Gene Hinman. After Gene got his Ph.D., we returned to Mt. Vernon. Gene became a geology professor at Cornell. We raised our two boys there, with the help of a succession of dogs. I worked in a number of jobs at Cornell while completing my BA in biology. Later, I worked at Coe and then Virginia Wesleyan College beginning their first programs for adults returning to college. After we divorced, Gene and I stayed friends. When we both retired, we decided to give marriage another try, this time getting it right. During retirement we became volunteers with the Red Cross National Disaster Team, working 30 disasters across the country four to six weeks at a time. When that got too strenuous, we switched to St. Luke's Hospital, organizing their archives. Gene was diagnosed with dementia and as his condition worsened, I became his 24/7 caregiver. Gene passed away in December 2017. As I tried to figure out who I was without him, I began volunteering with the Family Caregivers Center, hoping all I had learned might be useful to someone else. I became the newsletter's editor because of my love for writing and research. I admire the staff of the Center and the imaginative programming they have developed to aid both caregiver and care receiver. I have learned so many things that I wish I had known when I was a caregiver, many things that would have made life so much easier. Advice for volunteers and caregivers? To show compassion and gratitude to all, including yourself.

-Dot Hinman, Editor, Centered News

Dot Hinman Centered News

Editor

© 2020 Mercy Medical Center

© 2020 Mercy Medical Center

901 8th AVE SE, Cedar Rapids, IA 52401 319-221-8866

fcgc@mercycare.org www.familycaregiverscenter.org

From the west: Take 8th Avenue east and turn right at 9th Street. Before reaching 9th Avenue, turn left into parking lot driveway. From the east: Take Mt. Vernon Road west and turn left on 10th Street. Travel one block and turn right onto 9th Avenue. In the middle of the block, turn right into the alley/drive the block and then turn left into the parking lot. Parking: Free convenient handicap accessible parking in the back of the building.

• One-on-one meetings with a trained volunteer or staff member

• Educational events

• Support groups for all genders, one specific for men

• Access to respite options so caregivers can have a break

• Scheduled question-and-answer sessions with representatives from the Veteran Affairs and Medicaid Offices

• Resource lending library with trusted information

• Art, music and chair yoga

• A multi-week book study using the book, The Mindful Caregiver, followed by an on-going support group

• A four-week series for caregivers whose loved-one has died, followed by an on-going support group

Contact Us

How to Find Us 901 8th AVE SE, Cedar Rapids, IA 52401

About the Center

The Family Caregivers Center of Mercy is a resource for family caregivers who are caring for adults living with chronic conditions such as dementia, Parkinson’s, cancer, diabetes, arthritis, COPD, etc.

Caregivers often feel alone, overwhelmed, and are not sure where to find help. Sometimes it is difficult to even know what help is needed. Trained volunteers and staff members listen to caregivers and help them identify needs, strengths, answer questions, and help caregivers get connected with existing resources.

The Center Provides