Caring for Yourself while Caring for Loved Ones from Beginning to End of Life
CAREGIVING and SELF-CARE
Caregiving is rewarding and at the same time can be very stressful. Caregiving for someone with dementia poses its own unique challenges because of changes in personality, behavior, and dramatic fluctuations in needs over time. The sheer length of the disease 10-20 years, is in and of itself daunting. At different stages of the disease, you will need different strategies. Here are some goals, resources, and quotes that have been helpful to me, my family, and my clients.
“Self-care isn’t complementary or alternative- it’s fundamental for good health”—James Gordon MD www.cmbm.org
PLAN-PREPARE-ACTION-REST
Life Care Planning
Begin medical and financial planning early:
Begin the conversation with help from the STARTER KIT from the Conversations Project
If you are unable to have a conversation with a loved one about end-of-life planning, it is important to appoint a person who can best represent your wishes. This person will have the "durable power of attorney", and called the POA. They are your surrogate decision maker and can be a family member or trusted individual you feel can best represent your end-of-life plan. You need to establish a durable power of attorney (POA) for healthcare AND for finances.
Contact a Life Care Planning team for completion of the Advance Health Care Directive or download this resource guide.
Atul Gawande's 5 questions from his book, “Being Mortal” are guide points for starting the conversation about what you value in life and how these values reflect your end-of-life wishes:
What’s your understanding of where you are and of your illness
What are your fears or worries for the future?
What are your goals and priorities?
What outcomes are unacceptable to you? What are you willing to sacrifice and not? And later what if things get worse?
What would a good day look like?
You may also enjoy this podcast from On Being, featuring Atul Gawande.
Early Stage Dementia Care Plan
Learn everything you can about dementia and Alzheimer’s Disease (AD)
Join a support group
Find a Functional Medicine Doctor, and health coach preferably Bredesen trained
Follow Dr. Bredesen’s protocol- Read “End of Alzheimer’s Disease”
Add support individuals to your care team, with regular visits and responsibilities.
Make EXERCISE A PRIORITY for self and loved one.
Make MEDITATION A PRIORITY for self and loved one.
Make HEALTHY DIET A PRIORITY for self and loved one.
Get genetic testing for APOE 4 (AD risk gene)for you and loved one.
Add a dispensing support system for medication/supplements to ensure safety.
Begin a conversation about driving privileges.
Assess and plan for the level of care, cost, support, and home versus when to move to higher level of care.
Create a stimulating and structured environment for your loved one.
USE SLEDS to focus on your and your loved one's care: SLEEP, LEARNING, EXERCISE, DIET, SOCIALIZATION, and DECREASE STRESS
Early Stage Dementia Resources
Best Tools: Validation, Distraction, Creative Story Telling, Support Group
Book: The Validation Breakthrough
Guide to a technique used to validate the feelings of dementia patients to allow them to resolve past inner conflicts and communicate with their caregivers. A useful resource for those living or working with people with dementia or related disorders.
Article: "Geri Taylor's One Woman's Guide to Living with Alzheimer's Disease, NYT May 3, 2016
Film: Still Mine; A touching film about a couple dealing with Alzheimer's disease
Film: Alive Inside is a documentary of how music can wake up memory
Book: Can’t We Talk about Something More Pleasant by Roz Chas (cartoonist for the New Yorker Magazine)
Book: 36 Hour Day by Mary Mace
Book: A Gradual Disappearance by Elizabeth Lonseth
Article: “Geri Taylor’s One Woman’s Guide to Living with Alzheimer’s”. NYT May 3, 2016
Quote: "When your loved one is standing on the "other side" of the fence yelling at you, jump the fence and go over to their side". Kim Fowler, our case manager, told us this in 2008 when my father was diagnosed with dementia, Dad, not in his right mind, threatened to sue our family and refused all treatment.
Middle Stages Dementia Care Plan:
Continue to evaluate with a functional medicine doctor at least 4x/year or more for you and your loved one.
Assess for a higher level of care and add in-home support as the level of cognitive impairment increases.
Continue in a support group.
Increase your support team and delegate/clarify responsibilities and how often.
Follow SLEDS check-in for your and your loved one's care: SLEEP, LEARNING, EXERCISE, DIET, SOCIALIZATION, and DECREASE STRESS.
Stop driving. Get assistance for intervention/ explanation.
Stop cooking with stove/oven unless helper is present in the kitchen. Kitchen preparation OK with a helper present.
Create a stimulating and structured environment for your loved one.
Assess and plan for the level of care, cost, support, home versus when to move to higher level of care.
Begin to make plans for burial/ cremation and choice of mortuary is one of the last things you may want to do, but it is part of the process. You may also explore the possibility of becoming your own funeral agent and avoiding mortuary costs depending on where you live. Green burial is an option but few mortuaries offer this service. This can be the most sensitive subject to deal with. For me, I was unprepared for the grief that came up when I began this planning. See the article below on planning funerals. Going to the funeral and opting for a memorial at a later date, has become more popular in recent years and takes some of the stress off of planning for a service to honor your loved one.
Middle Stage Dementia Care Resources
Best Tools: Self Care; Playfulness, planning, enlisting more support
Book: Death In Slow Motion
Book: Where The Light Gets In by Kimberly Williams Paisley
Book: A Guide for Caregivers of Aging Parents with Alzheimer's, Word of Assistance, Comfort and Inspiration by Ellen Gerst
Article: "Paula Wolfert's World", March 14, 2017, NYT
Article: "Fraying At The Edges", April 30, 2016, NYT
End-Stage Dementia Care Plan:
What is a good day for you?
What is a good day for your loved one?
Enlist the help of hospice and or Palliative care specialists.
What if things get worse? What would your loved one want at this point? "A question posed to a loved one can be as simple as, "Do you want to go quick or slow?", to help guide your actions at this stage.
What is the purpose in providing medical care? Something to get clear about with you and your family.
Re-evaluate what is useful and/or necessary medicines and treatment and why. Some continue everything to the very end. Others make decisions to withdraw treatments over time or altogether. There is no right and wrong way at this stage. Get help from experts in this field of end of life care to assist you in clarifying your decision in these challenging times.
If your loved one develops a UTI or pneumonia, these can be treated or not treated. Many infections can expedite death and ease suffering when treated with certain medicines. Again, get help with these decisions with specialists in the field of end of life care.
Your loved one does not have to be in pain and can be given medicine to help ease their transition as they move into end of life care. (Morphine or Fentanyl patches for pain are quite effective for pain, as Atropine to dry secretions.
End-Stage Dementia Resources
Best Tools: Time and space to grieve and be with you and your loved ones, write, talk, move, SELF CARE and Support.
Why Infection May Be a Good Way to Die by Manisha Juthani-Mehta, MD
Freddy the Leaf by Leo Buscaglia. The cycle of life is told from a leaf's perspective.
Advance directives authorize stopping food and fluids in case of dementia in NY and Washington State in 2018. On the way to the legislature in these states.
Effects of Line Dancing on Mental Health in Seniors after COVID-19 Pandemic.
