Here is what works for me when I need to calm down my emotional reactions:
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What will I need to do or to pack before I run out the door?
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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.
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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

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

The most important gift you can give this holiday season.

I think you should talk about your medical and end-of-life wishes when you are with your family at Thanksgiving. (Why does everyone laugh when I say this?) I am absolutely serious. It is a great time to talk as a group about what is important to you and how you would want to be cared for if you were seriously ill. The up side of talking as a group is that it takes the pressure off of the seniors in the family who would like to talk about their wishes but don’t know how to bring it up. It also takes the pressure off of the family members who want to talk to the elders in their family but don’t know how to bring it up.

A great way to begin the conversation is to use the Go Wish Cards. www.gowish.org
Look at this game on-line before you head over to the family and then use it as a starting place for your conversations. Or use my new advance directive quality-of-life statement as a tool to talk about what is important to you. You can find this at: https://kindethics.com/2012/11/my-new-quality-of-life-statement-to-attach-to-my-advance-directive/ You may also want to print out my Insider’s Guide to Filling Out Your Advance Directive which you can download at: http://thecaregiverspath.com/assets/pdf%27s/Insider%27s%20Guide%20-%20Viki%20Kind.pdf

The main thing is to make the conversation safe and fun. Yes I said fun. When I talked to my husband’s family about advance care planning, they got into the spirit of it and began arguing over which adult child was going to pull their dad’s plug when the time came. Of course this was a joke and represented the funny way his family communicates. As the conversation progressed, people were surprised by what the different family members wanted to write down in their advance directive. I tell you this because these can be interesting and insightful conversations. You may think you know your loved ones but you will be surprised by what they may tell you is important to them.

Ideally, bring a copy of your state’s advance directive for each member of the family. Feel free to forward them my quality-of-life statement and the instructions from my website.

This may be the most important holiday present you give and get this year.

Have a kind and respectful day.

Getting Caregivers to Ask for Help – Viki’s Four-Step Process

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.

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.

My New Quality-of-Life Statement to Attach to My Advance Directive

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 below 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?

Here is my new quality-of-life or meaningful recovery statement. My wishes haven’t changed but how I am saying it is much more complete. Feel free to take any part of it you would like. Use the basic headings and then make it personal and meaningful for you. I would recommend attaching it as an addendum to a basic advance directive form that works in your state.

Advance Healthcare Directive for Viki Kind – dated 11/1/2012

Types of illnesses where this advance directive would apply whether I am terminal or not terminal.

I can never list every type of disease that might make me begin to lose my mental capacity but the list might include, but not be limited to: all types of dementias, stroke, brain injury, mental illness, anoxic event, etc. I don’t have to be completely out of it like being in a coma, persistent vegetative state, or minimally conscious state for this document to go into affect. And I don’t have to be terminal. The point is that I don’t want to have my life prolonged/sustained if my brain no longer works well enough to enjoy what is important to me.

What is important to me? (The loss of any of these might be enough for my decision maker to implement my wishes documented in this advance directive.)

To make a difference in the world.

To be able to communicate with those I love.

To receive the joy that comes from personal relationships.

To have some independence.

To be able to give love, not just receive people’s kindness.

To not be a burden on my family/friends – financially, emotionally or physically.

To have a good death as defined by me (see below).

What conditions would I find reprehensible to live with long term? (Please give me the chance to recover if recovery is possible, but if I am not recovering to a level of functioning that I would think is worthwhile, whether terminal or not, then choose comfort care and hospice which I understand will lead to my death.)

All of the following conditions do not have to be present at the same time for the decision to be made to allow me to die from my illness/injury. Any one of these conditions may be sufficient enough to change my course of treatment from prolonging my life to comfort care and allowing a natural death.

This list of “Conditions I would not want to live with” includes but is not limited to:

Not recognizing my loved ones.

Not being able to communicate by voice, computer or sign language.

Wandering around aimlessly.

Suffering that isn’t necessarily pain related.

Significant pain that can not be controlled.

Significant pain that requires so much medicine that I am sleeping all the time.

Having to live in a skilled nursing facility or sub-acute facility permanently with my cognitive impairment. Nursing homes create such sadness in me every time have I visited or have stayed overnight with a loved one. I am too empathetic and take in people’s suffering too easily to be in that environment. It would destroy me long term. A short-term stay in a SNF/rehab/sub-acute is okay if I can recover to a life that I would consider worth living. (I understand that with certain types of traumatic brain injuries, they take a longer period of time to evaluate whether or not recovery is possible.) But if it looks like I am not recovering, then no thank you.

Okay, now the CPR, ventilator and feeding tube conversation.

My overall guideline is that if CPR, ventilator support or a feeding tube/TPN can return me to what I would consider to be a meaningful existence, (what is important to me), then please give me CPR, ventilator support and/or a feeding tube/TPN. But there has to be value in these medical options and any other medical treatment choices that are being considered. Don’t do things, including but not limited to, antibiotics, etc., that are just to sustain my poor condition.

I am not opposed to living with a feeding tube/TPN if it gives me many years of being able to enjoy what is important to me. But if the feeding tube/TPN is just to sustain my miserable condition, (what I would consider reprehensible) then don’t put it in or give me feedings through it; and please take the feeding tube out if it is already in. (Okay, if I am on hospice and the feeding tube gives you access for administering the pain and suffering meds I need, then you can leave it in. But don’t put food or additional liquids in it.) The feeding tube, like all medical decisions, needs to create value in my life, not just sustain my life.

If I am still healthy and can still experience lots of the things that are important to me, then give me CPR. But as my health declines and CPR becomes less statistically successful, then make me a DNR. Just like many doctors, I don’t want to die by CPR. I want to die peacefully without life-prolonging medical interventions. (Doctor, please ask yourself the surprise question: Would I be surprised if Viki died during this hospitalization or died in the next 6 months? If the answer is “No, I wouldn’t be surprised,” then talk to my decision maker about end-of-life choices, including putting me on hospice.)

Reassurances for the decision maker

You are allowed to make the best decisions you can based on the circumstances and what you know at the time. You do not need to know for certain or absolutely that you have all the answers. The decision doesn’t have to be perfect. Use your heart and your head. I trust you to do the best you can. (Ed, you don’t have to go into super-perfectionist mode.)

I believe love does not obligate a person to sacrifice themselves to be the caregiver for another. The damage done to the caregiver, emotionally, physically and mentally is too costly. I do not expect someone to give up their mental, emotional and physical health for me. Look at the MetLife studies. Caregiving sucks. And I love my decision maker and alternates too much to impose such a burden on them.

(Ed, if you need some time to make peace with what has happened, then you can take the time you need. I don’t want the decision to feel rushed or uninformed, which would cause you a lifetime of regret.)

For you doctor, your role is to give my decision maker as much information as you can so he/she can make an informed decision. I encourage you to share your wisdom, guidance and experience but ultimately, it is my decision as expressed through my decision maker and this document. Remember, this document is an act of autonomy and should not be ignored by my decision maker/s, other family members, doctors or worst case, the courts. (I will definitely come back and haunt a judge who isn’t respecting my wishes.)

What is a good death in my opinion?

I would prefer to die at home but I realize that sometimes, a person needs to die somewhere else so I accept that. I would like to have my family/friends with me which includes and is limited to those I interact with on a regular basis. Those family/friends who have chosen to not be in my life while I was living should certainly not be there as I am dying. Because I like control over my life, I would like to be able to clean up my desk and to get my financial information updated. I would like to be able to write love letters, record messages and to say my goodbyes. (I will do my Go Wish Cards and leave a copy for my family.)

I would like to die with reasonable pain control. For the days leading up to the death, I would be willing to tolerate a certain amount of pain if that allowed me to have meaningful time with family/friends. But at the end, there had better be no pain and definitely, no air hunger. (That doesn’t mean ventilator support; it means manage my air hunger with medications.)

And you better not be force feeding me by mouth, by IV or by tube as that would increase my suffering. (And that includes you at the skilled nursing facility, sub-acute facility or other care community if I happen to be dying there. I know you have your regulations but I also know you can’t assault someone with food if they have said no when they had capacity.)

That’s it for now.

Viki Kind ________________________________

Date: 11/1/12

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