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 affordability):

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 research. 

* 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 assistance.

* 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 hospital

*      List all current prescription and non-prescription meds used

*      List any food and drug allergies

*      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, etc.. 

* 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 serious illness.

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. 

Iris L.

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.