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I Have Alzheimer’s or Another Dementia
Planning for Incapacity Without Family Friends to Help
Hello, I am new here. I am in my 60's and experiencing some cognitive changes. I will be tested in February 2022 with a neurologist. I am at elevated risk for Alz as my mother's side immediate family all had Alz and passed away in their 70's. I am actively trying to be proactive in planning for what may be coming my way. Being proactive and planning as much as I can gives me some relief from the anxiety which I believe is caused more by the unknown and what if's. I am attaching a list of planning steps below that I have put together to help me over the months that I have been working on this. Perhaps it may help someone else with their planning.
I found it difficult to find information for people who have no family or friends that you can count on to be your financial or medical POA. Seems everything is geared for people with family and close friends.
I call this a "Recipe for Incapacity or End-of-Life Planning for Anyone Without Family/Friends". Adjust to your needs, taste, and affordability.
Hope this is helpful! All the best to everyone!
RECIPE FOR INCAPACITY OR END-OF-LIFE PLANNING
FOR ANYONE WITHOUT FAMILY/FRIENDS
Ingredients (adjust according to need, taste, and
1 Primary Care Physician (that really has
interest in your overall health. Consider a concierge doctor)
1 Attorney (Eldercare or Estate Planning)
1 Financial Advisor
1 Tax Preparer/Accountant (or other
service/volunteer offering tax preparation)
1 Medical and Home Care Manager
1-4 Insurance (Life, Health, Long Term Care,
Personal Catastrophic Liability)
1 Heaping of Money (pension, Social Security,
savings, home/property, reverse mortgage)
* 1. Work with an
attorney (Eldercare or Estate Planning) to get legal documents written to name
someone to act on your behalf, for both financial management and medical
management. If you have no family or close friends that you can trust, then you
will need to consider naming a professional to act for you. Some attorneys and
law firms will act as your financial POA and some family service or religious
based service organizations (who usually help anyone regardless of your
religious background or affiliation), like Jewish Family Services, Methodist Family
Services, etc. may act as your medical POA and even as financial POA. Documents you need to consider from an
attorney are Will, Financial DPOA, Health POA, Advance Medical Directive or
Living Will, HIPPA Authorization, Revocable Trust, Do Not Resuscitate (DNR), and
Disposition of Remains authorization. Also, similar to an Advanced Medical Directive and Living Will, if allowed in your state, consider getting from your doctor a POLST (or MOLST) form, describing what medical treatments you do or do not want.
* 2. Have and wear a
medical ID tag or bracelet made stating "Dementia", along with name
and emergency contact info. Consider wearing an emergency/medical alert device.
* 3. Register with your
local police department as a person with dementia at your address.
* 4. Contact a local
funeral home to plan in advance for your own funeral by deciding where and how
you want to be buried, cremated, or consider being donated to science and
* 5. You can find help
managing your monthly bills for a monthly fee, by using a bill paying service like
“silverbills.com", or a local family service and home health care
organization that offers bill paying or money management services. Seniors can
try contacting their local area agency for the aging for local resources and
* 6. Use online senior resource search sites
to help you find resources that you need help with.
* 7. Create a folder or
binder with plastic pocket sheets (or save to a flash drive), containing as much information about you as
possible. Make 2 extra copies of this folder and provide 1 copy to your trusted
financial DPOA agent and 1 copy to your medical POA agent along with a house
key (or if comfortable doing so, place key in a small combination lock box like
real estate agents use and lock in place outside near front or back door).
Include as much of the following as possible in your folder or binder and keep
all 3 binders updated annually or more often as needed:
* All important
contacts with name, relationship, phone, address
* List your current
healthcare providers with name, specialty, phone, address
* List all insurance
policies - health, life, auto, with name, phone, policy numbers
* List preferred
* List all current
prescription and non-prescription meds used
* List any food and
* List vaccination
history record with name of vaccine, dose, date and where received
* List current medical
conditions and treating provider with contact info
* List medical history
condition, treating provider, age, any notes
* List blood related
immediate family member medical histories if known
* List all financial
institutions and accounts. Provide to your financial POA agent
* Include photocopies
of driver’s license, health insurance card, Medicare card, etc..
* Include funeral
plans with name of funeral home and cemetery
* List things you
like, type of music, cooking, reading, games, TV shows & Movies, gardening,
* 8. Unclutter your home and
get organized as much as possible. Hold yard/garage sales. Think downsizing and
prepare for possibly moving into assisted living and memory care if you can
afford it or have LTC insurance. Remember all your savings and property is
there to take care of you as you need it.
If you run out of money, you will need to apply for Medicaid several
months before you do. Medicaid usually will pay for nursing home care. But
learn and beware of Medicaid eligibility requirements. To help cover all your
basis, look for a continuing care community offering different levels of care
(independent, assisted, memory, and skilled nursing) that accepts Medicare and
Medicaid. You don't want to move into one place that offers only independent
and assisted living, but no memory or skilled nursing care if you have or are
at higher risk for dementia/Alz, and have to move out when you would be unable
to cope with finding a new place to live.
* 9. If or when you become unable to make decisions for your own health and finances, you may need court appointed public assistance or private pay Guardianship or Conservatorship.
* 10. Consider being an outspoken advocate on
behalf of seniors locally and/or nationally.
While i think this is a great list I also know it is extremely hard
to find knowledge people to help create and Advance directives for those with dementia.
Every person should have a POLST. Some places call it a MOLST. In my opinion all
people should create one not just those with dementia as one never knows what
can happen in life. Thar is also a lot one must learn before filling one out as
this is critical to know before you make the decisions.
Thanks so much Michael. I was unaware of the POLST/MOLST form. I have added to my list. A doctor would be more able to write a medical directive order vs. an attorney written medical directive.
For those not familiar with this medical form. And not all states use or allow this form.
The MOLST is the Medical Orders for Life-Sustaining Treatment
and the POLST is the Physician Orders for Life-Sustaining Treatment.
They're both the same thing, but in different states they call them by
these two different names. It is a written medical order from a
physician, nurse practitioner or physician assistant that helps give
people with serious illnesses more control over their own care by
specifying the types of medical treatment they want to receive during
Welcome, Brent. I too, have no family close by or interested in being my POA. I have plans on paper such as you have, but as Michael stated, finding professionals who are competent is very difficult. Even those who present themselves as specialists in caring for older adults, I have found are not fully reliable.
So far I am doing my own care. My diagnosis is cognitive impairment not otherwise specified. Make sure you are thoroughly evaluated medically and neurologically, because there are many mimics of dementia, some of which may be treatable if caught in time. I follow Best Practices which have been helping my function and prolonging the early stages.
PS: many caregivers eventually develop cognitive changes due to stress. But everything must be checked out, anyway.
Hello Iris, Ive seen and read several of your informative posts over the past few days. I am impressed at how you seem to be dealing with this so well with coping and managing things by yourself for the most part, and for so long already. I agree that I too am finding that some of the so called experts and paid professionals in the business of caring for seniors, seem to not be very good at doing much other than charging high fees for what little they do. All the care services and senior living communities are all so expensive, and very few accept Medicare and Medicaid. Fortunately I did buy a LTC policy in 2003. I hope I can continue to afford the ever rising premium increases every few years.
I wish you the best and hope you can continue to care for yourself as long as possible.
You are fortunate to have the LTC policy. My mother had a transient amnesiac event
and was therefore denied. It was one day that she could not remember anything.
It was years before she developed Alzheimer's. My friend had a LTC for her mother and was able to keep her home with full time care with a policy of $240,000 I think she said.
Kuddos to those with forethought for LTC.