Clarifying How to Use the Structure of my new Quality-of-Life Statement to Make it Your Own
March 22, 2013 by Viki Kind
Filed under For Healthcare Professionals, For Patients & Families
The goal of writing a quality-of-life statement is to have it express your personal preferences and to have it sound like you. One of the problems with many of the legal/medical forms is that they all sound alike and they don’t allow your voice to be heard. I encourage you to use the categories I have listed below to express what you would want people to know about you if you were too sick to speak for yourself. You can use some of my language from my document at https://kindethics.com/2012/01/my-new-quality-of-life-statement-to-attach-to-my-advance-directive/ if you would like but my goal is for you to make it personal and meaningful to you. You will know you have gotten it right if people say to you, “Yes, this is sounds like what he/she would say.” By making it feel personal, you will help your family/friends feel more confident that they are truly honoring your wishes.
Sections of QOL Statement to Consider Including in Your Directive:
? Types of illnesses where this advance directive would apply.
? What is important to me?
? What conditions would I find reprehensible to live with long term?
? CPR, ventilator and feeding tube preferences.
? Reassurances for the decision maker.
? What is a good death in my opinion?
? What I want the doctors know about honoring my religious/cultural beliefs both while I am sick and/or dying?
If you have questions, feel free to contact me at kindethics@gmail.com. If you would like to share your new document with me, I would love to see it so I can see how the structure is working.
Have a kind and respectful day.
Crisis Planning Worksheet to Support Caregivers Who Have to Make Urgent Decisions
February 11, 2013 by Viki Kind
Filed under For Patients & Families, Newsletter
If you would like this in a Word Doc, email me at kindethics@gmail.com
Caregiver Crisis Planning Worksheet
Ideally, before the next crisis, you should read this worksheet from the front to the back. Then you should fill in your personal information and strategies for handling the next caregiver crisis. If you are in a crisis right now, you should go to the last few pages immediately and read the rest later, but as soon as possible.
This worksheet is divided into three sections:
1. An overview of things that go wrong in how we cope during a crisis.
2. An overview of how we can improve how we cope and prepare for a crisis.
3. A worksheet to plan how you are going to handle the next crisis.
Evaluating your crisis management style
Everyone who has been in a crisis has looked back and said, “I wish I had said or done something differently.” This is an opportunity for you to think about how you have managed a crisis in the past and to discover what you did well and what you need to improve. Then you can be better prepared and more confident when the next caregiver crisis occurs.
Let me tell you about Monica – a true story. Monica had been home from work for a few hours and was enjoying her third glass of wine. The phone rang and it was the hospital calling to tell her that her father had fallen, had hit his head, and was unconscious. (Sounds like a typical caregiver day – right?) She jumped in the car, forgetting to grab her purse, and drove to the hospital. About a mile from the hospital, she sees a police car behind her signaling for her to pull over. The police officer begins by asking for her license, which she forgot to bring with her. Next, the officer smells alcohol on her breath and proceeds to have her take a breathalyzer test, which she fails. She is arrested for drunk driving. Of course, Monica doesn’t make it to the hospital to be there for her dad.
I don’t need to tell you what she did wrong. It is obvious. She now knows that she should have been more prepared. She could have had a crisis plan that could have slowed her down for just a few minutes so she could have thought more clearly and made better decisions.
How are you in a crisis?
Think about a time when you handled a difficult situation really well. What did you do that made it easier, better, more manageable, etc?
________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
Now think about a time when you panicked, mishandled a situation, or when you didn’t make the right decision. What got in the way of you thinking clearly enough to cope with what was happening?
________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
Don’t worry that you struggle. We all do. We are all incredibly human. This is why I want you to create a plan that can help you get calm, to ask for help, and then think more clearly.
Getting calm
Everyone is different when it comes to what will help them calm down. For me, it is picking up the phone and calling a friend. For my brother, it is taking a walk and getting some air. For others, it might be taking a couple of deep breaths, having a quick cry, praying, counting to ten, or doing research on the Internet. You will need to think about what has worked for you in the past that has helped you get your emotions under control. Go to page 5 and write down what will help you stay calm.
Why getting calm matters
The problem with decision making in a crisis is that our emotions have taken over our brains and this leaves little space for us to think rationally. The initial surge of emotion and adrenalin lasts approximately 90 seconds. Then, every time we think additional panicky or scary thoughts, we fire off 90 more seconds of emotional chaos. The goal of slowing down for a few minutes is to give your emotional brain a chance to calm down which will then allow your rational brain time to get activated.
(This is why Monica shouldn’t have rushed out the door. If she had sat still for a few minutes, she could have thought about getting someone to drive her to hospital. If she had calmed down even a little bit, she might have remembered her purse or called for someone to come and help her.)
You have more strength than you realize
You have more control and strength in a crisis than you realize. You can take control of your brain if you don’t keep telling yourself things that get you more upset. Instead of telling yourself, “Oh my goodness…I am so afraid…I can’t believe this is happening…Oh no this is the worst thing that could happen, etcetera.” Tell yourself, “I don’t have time to be upset right now…I have to focus on figuring out what is the right thing to do.” Tell yourself that you can cry, scream, or be afraid later on, but right now, you have to think. Say to yourself, “I am calm and focused. I can listen and understand what is happening and make a good decision.”
Here are ideas for what you might need to do before you run out the door:
• Ask someone to watch my kids.
• Arrange for someone to stay with the other person I am caring for.
• Tell my boss I have to leave.
• Have someone come over to drive me since I am still hysterical.
• Pack a bag because I may need to stay over night at the hospital. (I had a bag that I kept in my trunk filled with what I would need when I had to meet one of my relatives in the emergency room. I made sure I had a sweatshirt, bottled water, snacks, change for the vending machine, a book to read, and a change of clothing.)
• Pack my phone and/or computer charger. (I wish I had remembered this when I went to visit my mom in the hospital and ended up staying there for four days straight.)
• Pack my list of phone numbers.
• Grab this crisis action worksheet.
• Bring a list of person’s medications and medical history.
• Bring my own personal medications that I will need later on today.
• Pack a book to read or something to do while I am waiting.
• _______________________
• _______________________
Trust me. You will be so glad that you stopped and went through this list before you rushed out the door. Not only will you be more prepared, but by reviewing this worksheet, it will help your brain calm down. Before you read the next section, go to page 5 and fill in what you need to pack. Make sure you think about what you might need and what your loved one might need, etc. I am sure you will keep adding things to this list.
If you have to make an important decision in a hurry:
Ask how much time you really have. Oftentimes, the doctor says you need to decide right now, but really you could have a few minutes, a few hours, or even a day. Sometimes the doctor will want you to rush because it convenient for his/her schedule to take care of the crisis right now or the doctor may be worried about his/her legal liability if you wait too long. Ask the doctor how long you really have to make this decision.
Even if you only have a few minutes before you need to make the decision, take a couple of deep breaths or take a quick walk outside. Do whatever you need to so you can get past the initial 90 second surge of emotions that is getting in the way of thinking clearly.
What do you need to find out so you make the decision?
1. Find out the facts. I would encourage you to ask another person to help you listen and to have someone write down what is being discussed or record it. When in a crisis, your mind is not working as well as it usually does, so it helps to have someone there to be a second or third set of ears. If you don’t have anyone there with you in person, do a conference call with a friend or family member who can listen and ask questions. If you don’t know how to do this, ask someone there to help you or to use their phone.
2. Ask the healthcare professional to talk about the all the possible options/solutions that are available. There is rarely just one option or choice. You will feel better later on if you feel like you had a real choice in the situation.
3. Ask about how each of these solutions would play out over time. Too often, people forget to ask what will happen in the long-term. Yes, right now is really important, but make sure you ask about how your decision will play out in the future. How will the patient’s quality of life be changed by this decision?
4. Ask about the risks of choosing the solution the person has recommended. One of the biggest dangers in picking a solution too quickly is that we don’t ask about the downside or possible negative outcomes. We are so anxious to have things work out okay, that we forget that there is no perfect solution or solution without risks.
5. If you are a person who needs to write things down, then do so. If you are a person who needs to talk things out, then talk. Use whatever strengths you have when you usually problem solving. For me, I have to do some research on the Internet and then talk to someone I trust. After that, I can make my own decision. Stop for a minute and think about what you usually do when you have made good decisions in the past.
6. Make the decision. I know you wish you had more time. I know you wish you had more information. And I know you wish you knew for sure that this is the right thing to do. We can never know for sure. All we can do is the best we can based on what we know at the time and what kind of pressures are on us in that moment.
7. Now that the crisis is over, see if you need to modify or improve the plan. You can’t go back in time and change what has already happened, but you can see if you need to put an even better plan in place. This is life. We can only go forward from where we are.
8. Get some support for you. Now that the crisis is over, you need to get some comfort and support. Reach out to the people who make you feel better or stop and do the things that make you feel better. Caregiving is never about just one crisis. It is a long journey with many crises and decisions. This is why you need to begin building a support system around you so you can survive the long caregiver’s path.
It is time for you to create your own action plan.
Make copies of all of this paperwork and put copies in your car with your caregiver bag, in your briefcase, a drawer at work, in your purse, near your front door with the bag you have packed, and/or in the drawer where the person you care for lives. You can also email yourself a copy or to friends/relatives who could fax it to you at the hospital. You will also want to add a copy of the person’s Advance Directive for Healthcare, Living Will, Durable Power of Attorney, and other documents you will need.
This crisis action plan worksheet will only work if you have it with you.
My Crisis Action Plan
Here is what works for me when I need to calm down my emotional reactions:
________________________________________________________________________________________________________________________________________________________________________________________________________________________
What will I need to do or to pack before I run out the door?
________________________________________________________________________________________________________________________________________________________________________________________________________________________
________________________________________________________________________________________________________________________________________________________________________________________________________________________
Who will I need to call and what are their numbers?
Doctor, paramedics, hospital or nurse helpline, insurance company, family, friends, hospice nurse, palliative care team, suicide hotline, etc. Once you have gotten to the emergency room and the person is being cared for, your first job is to call the insurance company and let them know what is happening so you don’t end up owing more money than you should.
1.
2.
3.
4.
5.
6.
7.
Who could come over and be with me right away?
Who can give me emotional support on the phone?
Who do I need to call to let them know what is happening?
Who can I call to help me figure out what is the right thing to do?
Who can I call to help me do some research on the internet?
While I am waiting for the ambulance, the doctor, or for help; I can decide what questions I will need to ask and what I will need to tell the professionals about what has happened?
What is important for me to tell them about my loved one’s condition and healthcare preferences?
Information to have ready (Use the back of this sheet for your notes)
1. Attach copies of the person’s advance healthcare directive, living will, durable power of attorney for healthcare, POLST/MOST/MOLST/POST form, and/or other legal documents.
2. Bring “List of Questions to Ask When Making the Medical Decisions”
Download from Viki’s resource page on her website: www.TheCaregiversPath.com.
3. Attach information about the person’s medical history
Ask the primary care doctor for a copy of the person’s history and physical. Staple this information to this worksheet.
4. Bring “List of Medications,” including any vitamins and herbs. Bring the actual bottles with you.
You will need to update this each time there are changes in the medications. Staple this information to this worksheet
10 Quick Tips for Crisis Decision Making
Do something to help yourself calm down. Breathe.
1. Ask how long you really have to make the decision.
2. Get the facts. Have someone do some research for you if you aren’t near a computer.
3. Ask about other options.
4. Ask what would happen if you chose these other options.
5. Ask about the positive and negative consequences of each of the possible choices.
6. Ask about the short-term and long-term consequences of each choice.
7. Have someone else help you listen to what is being said and to take notes and/or record it.
If nobody can be there with you, have the person call in and listen to the conversation over
the phone.
8. Make the decision realizing that you are doing the best you can in this crisis situation.
9. After the crisis is over, think about whether you will need to modify or improve the plan.
10. Now that the crisis is over, get yourself some support. You just went through a lot.
Have a kind and respectful day.
ALZHEIMER’S ASSOCIATION OFFERS GUIDELINES AND TIPS FOR THE HOLIDAYS
November 5, 2012 by Viki Kind
Filed under For Patients & Families
ALZHEIMER’S ASSOCIATION OFFERS GUIDELINES AND TIPS FOR THE HOLIDAYS
Helping people care for loved ones with Alzheimer’s disease
LOS ANGELES, CA – The holidays are a time full of celebration, joy and special occasions with family and friends. But for people living with Alzheimer’s disease the season can present special challenges. The Alzheimer’s Association, California Southland Chapter has prepared “Home For The Holidays,” a handy guide with tips and advice for families caring for a loved one with Alzheimer’s disease.
The guide shows how, with careful planning, family celebrations can be a meaningful part of the holidays while ensuring safety, comfort and enjoyment for everyone. Its purpose is to help alleviate some of the stress associated with the additional activities and changes in routine at this time of year.
“Home for the Holidays” is available by calling the Chapter’s 24-hour helpline at (800) 272-3900.
Anyone with questions about Alzheimer’s disease is encouraged to call. Experts are available to speak with people who are concerned with their own cognitive health, and can assist family members and friends seeking information or resources for loved ones.
Highlights from the Alzheimer’s Association “Home for the Holiday” Guide:
Caregiving responsibilities layered on top of keeping up with holiday traditions can take their toll on Alzheimer families, especially on the caregivers. With some preparation, your celebrations can be filled with joy and magical moments to cherish.
Adjust your expectations
No one, including yourself, should expect you to maintain every holiday tradition or event.
Give yourself permission to do only what you can reasonably manage
Choose holiday activities and traditions that are most important to you
Host a small family dinner instead of a throwing a big holiday party
Consider serving a catered or takeout holiday meal. Many grocery stores and restaurants offer meals to go.
Start a new tradition. Host a potluck dinner where family or friends each bring a dish
Involve the affected individual in holiday festivities
People with memory loss can often share in activities. Here are a few ideas:
Wrap gifts
Bake favorite holiday recipes together. The person can stir batter or decorate cookies.
Set the table. Avoid centerpieces with candles and artificial fruits and berries that could be mistaken for edible
snacks.
Talk about events to include in a holiday letter
Prepare simple foods such as appetizers
Read holiday cards you receive together
Look through photo albums or scrapbooks. Reminisce about people in the pictures and past events.
Watch a favorite holiday movie together
Sing seasonal carols or read passages from favorite books
When the individual lives in a care facility
A holiday is still a holiday whether it is celebrated at home or at a care facility. Here are some ways to celebrate together:
Join your loved one at the facility-planned holiday activities
Bring a favorite holiday food to share
Sing holiday songs. Ask if other residents can join in.
Read a favorite holiday story or poem out loud
For more tips and information, visit the Alzheimer’s Association Web site (www.alz.org/socal) or call (800) 272-3900.
The Alzheimer’s Association is the world’s leading voluntary health organization committed to research, care and support for those living with Alzheimer’s disease and their families. For 30 years, the California Southland chapter has provided critical services and programs to thousands of families in Los Angeles, Riverside and San Bernardino counties. These services and programs include care consultation, support groups, the Medic Alert® + Alzheimer’s Association Safe Return® Identification Registry, and a 24-hour Helpline for information and referral at (800) 272-3900. The Alzheimer’s Association also provides education for health care professionals, caregivers and the general public; advocacy for improved public policy and legislation; and financial support to increase research to find the cause and cure for this devastating disease. For more information, visit www.alz.org/socal.
Documents and/or Photos available for this release:
PDF of News Release, “Home for the Holidays”
PDF of “Home for the Holidays” booklet
To view supporting documents and/or photos, go to www.enr-corp.com/pressroom and enter Release ID: 314642
Join me in Jefferson, Missouri – 8th Annual Policy Summit of the Missouri End-of-Life Coalition Conference on Sept. 27
September 4, 2012 by Viki Kind
Filed under Uncategorized
Join me as I will be speaking at the 8th Annual Policy Summit of the Missouri End-of-Life Coalition Conference on Sept. 27. This will be an exciting and educational day of great speakers and cutting-edge information.
The Missouri End-of-Life Coalition seeks to seek to engage the public, health care providers and policy makers in efforts to change, for the better, the way we live and die in Missouri.
Their goals are:
1. Improve the care and quality of living for Missourian who are at the end of their life.
2. Educate the public, health care providers, students, and policy makers regarding optimal care, resources and policy for the maximum benefit of dying Missourians.
3. Foster collaborative research efforts, identify exemplars and obstacles and improve quality to help us better understand the current realities in services and support of the dying in Missouri.
4. Empower dying persons, loved ones and caregivers to express their needs and expectations surrounding end of life issues.
For more information about the conference:
http://www.mo-endoflife.org/about/Summit_flyer.pdf
For more information about the Missouri End-of-Life Coalition:
http://www.mo-endoflife.org/
Have a kind and respectful day.
Frank M. will be interviewing Viki on “The Aging Boomers” on KSVY 91.3 and ksvy.com August 27 at 2PM.
August 15, 2012 by Viki Kind
Filed under Uncategorized
Frank M. hosts “The Aging Boomers” in on KSVY 91.3 in Sonoma, CA and ksvy.com Mondays at 2 p.m. He is the founder of Senior Care Authority seniorcareauthoity.com which provides free assistance to in finding In-Home Care, Independent and Assisted Living for loved ones. He can be reached at 939.8744 or frank@seniorcareauthority.com.
The Aging Boomers radio show features experts in various areas relative to the issues boomers and their families are confronted with on an everyday basis including senior care, nutrition, insurance, financial and estate planning. Listen to the show live at www.ksvy.com from 2–3 pm PST.
Have a kind and respectful day.
Sunrise of Playa Vista and Sunrise of Hermosa Beach – Caregiver Educational Events in August
August 6, 2012 by Viki Kind
Filed under Uncategorized
Difficult Decisions For Caregivers – Making Choices for Those Who Can’t
A free lecture by author and bioethicist, Viki Kind
Two dates and two communities to choose from! Call your community of choice today to reserve your spot.
Tuesday 6:30 PM
Sunrise of Playa Vista
5555 Playa Vista Dr.
Playa Vista, CA 90094
RSVP to 310-862-2704
Saturday 10:30 AM/HB
Sunrise of Hermosa Beach
1837 Pacific Coast Highway
HERMOSA BEACH 90254
RSVP to 310-937-0959
Have a kind and respectful day.
Viki will be speaking at the Fifth Annual Mid-America Institute on Aging on August 9-10th.
July 21, 2012 by Viki Kind
Filed under Uncategorized
Fifth Annual Mid-America Institute on Aging
Purpose
This inter-professional gerontology conference will provide practical tools and groundbreaking information related to successful aging and gerontology. Topics will include inspirational keynotes as well as multiple sessions ranging from healthy aging to coping with illness.
Target Audience
Older adults, family members, caregivers, nurses, social workers, employees working in
long-term care settings, nursing home administrators, occupational therapists, physical
therapists, dental professionals, and case managers
Course Objectives
After attending this conference participants will be able to:
• Demonstrate knowledge, interest, and commitment in working with older adults.
• Describe ground-breaking ideas for improving the lives of older adults.
• Assist elders, families, and their caregivers to successfully navigate health issues important to older adults.
• Describe options available for elders to pursue a more active and enjoyable lifestyle.
• Describe the magic and power of caring for the caregiver and the recipient of care.
• Identify how a sense of humor induces physical and mental changes in the body.
Registration Information
Date & Time: Thursday and Friday, August 9 and 10, 2012
Registration: 8–8:30 a.m. each day
Location of Conference:
The conference will be held
in the University Center on the campus of the University of
Southern Indiana, Evansville, Indiana. USI is located on
Highway 62, approximately two miles west of Evansville.
Hotel Accommodations:
Hotel accommodations in
proximity to the University include the Fairfield Inn West
(812/429-0900) and Holiday Inn Express (812/421-9773).
Ask about the USI rate to receive a discount.
Refund Policy:
Registration fees are refundable, less a
$15 service charge, through August 8, 2012. No refunds
will be made after that date.
Questions?
Call 812/464-1989 or 800/467-8600
Email: extserv@usi.edu
health.usi.edu
MAIA Post Conference
Location off campus: SWIRCA & More
Saturday, August 11, 2012
8:30 a.m. to Noon; Registration: 8 to 8:30 a.m.
Who should attend:
Open to the public and anyone needing more basic information
on caring for aging and/or disabled loved ones.
Topics to be addressed:
How to obtain care in the home setting
When would dad or mom qualify for a nursing home
What does Medicare/Medicaid cover
How to cope with poor vision
Frequently asked questions
Vision Venture Van will be available to walk through in the morning
Cost: $20, includes continental breakfast
For additional information or registration:
www.SWIRCA.org 812/464-7800
In person or by mail at P.O. Box 3938,
16 W. Virginia, Evansville IN 47737-3938
Continuing Education Credit
Nurses, social workers, health facility administrators, health education specialists, case
managers and dental hygienists will receive up to 5.25 contact hours each day with
submission of documentation of sessions attended and completed program evaluation.
University of Southern Indiana College of Nursing and Health Professions is accredited
as a provider of continuing nursing education by the American Nurses Credentialing
Center’s Commission on Accreditation.
University of Southern Indiana is an approved provider of continuing education for
social workers, marriage and family therapists, psychologists, and other professionals
licensed in the state of Indiana. Social workers in other states should check for approval
on a program-by-program basis.
Approved by the Indiana Division of Aging for up to 5.25 contact hours each day.
This program has been pre-approved by The Commission for Case Manager
Certification to provide continuing education credit to CCM® board certified case
managers. The course is approved for 10.5 CE contact hour(s). Activity code:
M0000003 Approval Number: 20130028
Approved by the National Commission for Health Education Credentialing, Inc. for up
to 10.5 Category 1 CECH in health education, Provider Number: SEP3910.
The University of Southern Indiana has been approved by the Indiana State Board of
Health Facility Administrators as a sponsor of continuing education programs for health
facility administrators (License #98000033A).
The University of Southern Indiana is an approved provider for continuing education
credits by the Indiana Health Professions Bureau and the Illinois Board of Dentistry.
Have a kind and respectful day.
VA Caregiver Event in Chicago on June 20
June 1, 2012 by Viki Kind
Filed under Uncategorized
Join Viki on June 20th from 1-3pm in building 135 room 148 for a VA Caregiver Event.
3001 Green Bay Road
North Chicago, IL 60064
Empowering Caregivers Who are Facing Difficult Decisions
About the workshop:
Wouldn’t it be a relief to know you are making the right decisions and doing right by the person in your care? Whether you are caring for someone with a brain injury, dementia, mental illness, or other cognitive impairment, you can learn the framework and tools to use when making the difficult life, health and end-of-life decisions. This is not a one-size-fits-all solution but can be adapted depending on person’s level of incapacity and the situation. Respect and compassion are the core values of this decision making process.
Have a kind and respectful day.
Alzheimer’s Tennessee, Inc. Presents The 26th Annual Alzheimer’s Disease Symposium June 14-15
May 9, 2012 by Viki Kind
Filed under Uncategorized
Viki will be speaking on June 14th at the Alzheimer’s Tennessee, Inc.
The 26th Annual Alzheimer’s Disease Symposium on June 14-15
The Clayton Center, Maryville, TN – near Knoxville
Research Symposium – Workshop for healthcare professionals
PLUS Strategies for Managing Dementia in Primary Care
http://www.alztennessee.org/
Have a kind and respectful day.
Getting Caregivers to Ask for Help – Viki’s Four-Step Process
January 20, 2012 by Viki Kind
Filed under Featured, For Healthcare Professionals, For Patients & Families, Newsletter
Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. Leo Buscaglia
I have never been very good at asking for help and like many family caregivers, I didn’t think that my own needs mattered. Thinking I had to do everything all the time caused me to have two breakdowns; once during my early years of caregiving and again the last year of my caregiving journey. (I was a caregiver for over 17 years.)
I wish I had known about the following statistics from the MetLife Study:
Family caregivers experiencing extreme stress have been shown to age prematurely and this level of stress can take as much as 10 years off a family caregiver’s life.
40% to 70% of family caregivers have clinically significant symptoms of depression with approximately 25%-50% of these caregivers meeting the diagnostic criteria for major depression.
Stress of family caregiving for persons with dementia has been shown to impact a person’s immune system for up to three years after their caregiving ends thus increasing their chances of developing a chronic illness themselves.
I don’t know which statistic frightens me the most. But I do know that I have paid an emotional, physical and financial cost for being a caregiver. (I also loved taking care of my family.)
But it didn’t have to be that way. I could have and should have asked for help. But I am a caregiver and when people told me, “Just make time for yourself,” it wasn’t that easy.
If you think about who in a family becomes the caregiver, it will usually be the person who is more nurturing and generous with their time. So by nature, the caregiver is the type of person who already gives more than others. And this becomes a vicious cycle of give – give – give instead of give – receive – give – receive.
I recently said to my friend who is an overwhelmed caregiver, “Maybe now is a good time for the rest of your family to learn what they need to do to help their grandfather.” What I heard back from her were lots of excuses:
They don’t want to help
They don’t know what to do
They don’t know him like I do
They will just make it worse
I don’t have time to teach them
It is just easier if I do it
I get tired of asking
I don’t think they would help, even if I asked
Why should I have to ask, they should just know what to do
I don’t want to be a bother
It is too much effort to ask
Sound familiar? I realized in that moment that it isn’t always that the family won’t help; it is the caregiver who is resisting asking for help. So let me ask you. If you had a broken shoulder, would it be okay to ask someone to carry your groceries to the car? If your car broke down, could you call for a tow truck? When your loved one needs help, don’t you get them the help you need? Then why don’t you deserve the same attention? Your needs matter and you deserve to have someone help you.
Viki’s Four-Step Process
Step 1:
I encourage you to explore what is keeping you from asking. Write down what goes through your head when someone says, “You should just ask for help.” What are your resistance statements?
Step 2:
Take your list of resistance statements and put a statement beside it to help you get past what has been preventing you from asking for help. Here are a few examples caregivers have come up with:
They don’t want to help – Well I don’t know this because I haven’t given them a chance
They don’t know what to do – I could teach them
I don’t have time to teach them – You don’t have time because nobody is helping you. If you teach them now, then they can help at other times in the future.
It is just easier if I do it– Only the first time.
Why should I have to ask, they should just know what to do – Would I have known what to do before I became a caregiver? Then how would they know?
I am not saying you will be able to get past your barriers right away, but you need to begin so you won’t break down like I did. One thing that helped me was to realize that the other person won’t do what needs to be done as well as I would. They may do things slower, awkwardly at first, and in their own way. But that is okay because you are going to get free time and your loved one will be okay.
Step 3:
Make a list of all the things that would help you such as practical, emotional, financial and information support. Write a really long list and carry it with you so when people say, “What can I do to help?” you can pull out the list, hand it to them, and ask them what they would like to do.
Ask for specific things:
Can you call mom each week and ask her about her favorite memories or talk to her about what is worrying her?
Can you call me every day to check on me? (This can be very helpful to keep your depression under control.)
I don’t have time to read this book about Maria’s disease. Can you read it and then send me the main points?
Can you research what is the best wheelchair to buy?
People can help from a distance:
Can your brother listen to Dad’s doctor’s appointment by speaker phone?
Can they do the shopping for groceries online and have the food delivered?
Could they pay for someone to come to the house to give you a massage?
Can they take over paying the bills or set up automatic bill pay for you?
Can they send $51 a month so you can pay for three hours of respite care?
Ask someone to create a phone tree to disseminate information. This way you don’t need to make all the calls. Have others spread the news.
Local help:
Mom needs a ride on Thursday for her haircut.
Could you pick up some milk and eggs when you go to the store today?
I need someone to come and clean my kitchen.
Can you sit with Bob on Thursday night so I can go to a class about coping with dementia?
These are just a few ideas. I am sure you can come up with lots of ideas, big and small. (Don’t hesitate to put everything on the list. You will be surprised by what people are willing to do.)
Step 4:
Ask a lot of people. You may need to ask 5 people to find one that will help you but that is okay because now you have one person who will help you. Ask people for things they can actually do. Different people have different abilities. Show them the list and let them choose what they would be comfortable doing. Tell them the deadline for when the task needs to get done.
Oh no, I hear your resistance statement coming through. “There is nobody I can ask.” Here is my response to break through your resistance. There are more people in your circle of friends, family and community than you think. Call a local faith community and ask for help. (You don’t even need to belong to that church or synagogue.) Call the Area Agency on Aging in your town and tell them what you need. They can help connect you to resources. Tell the people in the hair salon about the struggles you are facing and maybe they know someone who can help. Many high schools are requiring kids to do community service hours. Call the school and ask to have someone assigned to help you.
It may feel like a lot of work to begin to ask, but don’t let this stop you. This is another of those resistance issues. Remember that you are not just asking for this one time, you are training this person for the future. If you can get them to trained and used to helping, they might be able to help you every week or two.
Lastly, give gratitude even when you think your family should feel obligated to help. Of course they should but let’s be realistic. Our practical goal is to get them to help more than they have been. Saying thank you and giving words of appreciation go a long way to reinforce good behavior. And if that doesn’t work, you can always say, “If you don’t have time to help, then you are going to have to pay to hire someone to help me.” That will get their attention.
Have a kind and respectful day.
