Personal Blog #19 ... Ten Steps to Take When the Diagnosis is Alzheimer's ... 12/18/20

Yesterday I made a zoom presentation to caregivers and as part of my presentation I updated my previous list of important steps to take once a loved one is diagnosed with Alzheimer's disease (AD) or some other form of dementia.  Here is that updated list of Ten Steps to Take: 

1. Take away the car keys.  Before your loved one injures him/herself, or causes an accident that injures someone else or causes vehicle or property damage, you should take away the car keys.  This is often a very difficult and emotionally strained decision, but it is a decision that must be made.  Whereas it is true that some people diagnosed with dementia can continue to drive safely for quite some time, the issue is that there will be a time when your loved one will not be able to drive safely … and no one can predict just when that time will come.  So … better to take away the car keys before your loved one accidentally causes injury or property damage … or becomes lost and forgets how to call for help.

2. Meet with an eldercare attorney.  The attorney will review and/or prepare necessary end-of-life documents ... wills or trusts, living wills, health care proxies, and durable power of attorney.  You should also discuss long-term health care options with your attorney.  If you have long-term health care policies, review the provisions together.  Also, ask the attorney to review your current financial situation to determine if any assets in your loved one's name, or in joint/custodial ownership, should be moved solely to your name.

3. Meet with a certified financial advisor.  You and your financial advisor should discuss how to preserve, protect and grow your current income, investments, and other assets …  while also discussing plans for how you will pay for long-term care.  You should also discuss long-term care insurance options with your financial advisor to see if your advisor can be helpful in securing some options for you.

4. Discuss long-term care options.  Does your loved one prefer to stay at home for as long as possible, or prefer to be in a residential facility?  What do you prefer?  What will you do if no longer able to care for your loved one at home by yourself?  If not discussed previously and your loved one still has moments of clarity, now is the time to have these discussions with your loved one.  You should also try to leave yourself sufficient time to visit and check out various facilities in advance, and/or check out home health aide providers.  All facilities and providers are not the same, and you’ll need to do your homework.  There is a lot of helpful information on the NYS Department of Health website … www.health.ny.gov   

 

As you check out different facilities, you will learn that many facilities with Alzheimer’s patients are filled 100% of the time, so you will probably need to place your name on a waiting list.  At some facilities, if you do not place your loved one immediately when notified that a bed is available, your name will go back to the bottom of their wait list.  In other facilities, you can “pass” when notified but still remain at the top of their wait list.  There are a few different types of assisted living facilities, and there are also memory care facilities in which all residents have dementia or memory issues.  Similarly, home health care providers often charge different amounts depending on hours per day or per shift, holidays, meal requirements, etc.  So, if at all possible, leave yourself time to check out your various long-term care options well before you’ll need to make those decisions.

 

5. Learn about Alzheimer’s and other forms of Dementia at responsible websites.

 

The Mayo Clinic has excellent information.  Access at https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/symptoms-causes/syc-20350447

 

Johns Hopkins also has excellent information.  Access at https://www.hopkinsmedicine.org/health/conditions-and-diseases/alzheimers-disease

 

Major organizations such as the Alzheimer’s Association … access at www.alz.org …  also provide lots of helpful information.

 

There is also a wealth of excellent information at government sites sponsored by the National Institute on Aging and the National Institutes of Health.  Access at https://www.nia.nih.gov/health/alzheimers

 

Educate yourself about the stages of Alzheimer’s so you will have knowledge about what to expect.  The best presentation of the clinical stages of AD that I have found is the one provided by the Fisher Center for Alzheimer’s Research Foundation, a division of The Rockefeller University.  Access at https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

 

And don’t forget about local organizations here on Long Island.  My favorite is LIAD, the Long Island Alzheimer’s and Dementia Center (formerly known as LIAF, the Long Island Alzheimer’s Foundation which had been based in Port Washington).  At LIAD’s home offices …1025 Old Country Road in Westbury … 516-767-6856 … there are day care programs, support groups, and other services.  LIAD also has satellite branches in both Nassau and Suffolk.  LIAD can be accessed at https://www.lidementia.org/

 

6.  Locate day care options – Social day care programs are a win-win for loved ones and their caregivers, particularly when loved ones are in early to moderate stages of dementia.  The person with AD/dementia can engage socially with others who are also dealing with similar issues while having an opportunity to sing, dance, play games, etc. … and, while your loved one is engaged, you can enjoy several hours of respite time.  LIAD provides such programs, as do other organizations such as Ys, JCCs, town senior citizen departments, adult homes for seniors, and even some assisted living/nursing home facilities.

7. Join a good caregiver support group.  Try to find a group that meets solely for caregivers in your position ... for example, just for spouses, or just for children caring for their parents.  Such groups can focus more sharply on common issues.  But if you cannot find such a group, joining a mixed group is better than no group at all.  Try to find a support group meeting at least twice a month … but if such groups are unavailable, joining a group meeting only once a month is better than joining no group at all.  You will learn many helpful tips in a good support group, learning strategies from other caregivers who also “get it” ... other caregivers who truly can appreciate and understand what you are experiencing.  The emotional support from fellow caregivers can also be very helpful.  I personally learned more helpful information from other caregivers in my support group than I learned from all the articles and books I read about AD.

8.  Check out websites maintained by other caregivers.  One or more of the many online caregiver sites may provide you with just the support and guidance you are looking for.  I sought out a few dozen websites just by doing a Google search, and found a few to be very helpful.  I also maintain a website to help other caregivers.  I began my website in 2013 at the recommendation of a medical journal editor.  I have information about my own personal journey, and I post copies of my published articles.  To date I have had more than 100 articles published in peer reviewed medical journals, major newspapers, caregiver magazines, and on organization websites.  I also post occasional personal blogs that I do not send out for publication anywhere else … I simply post them on my website.

 

I don’t promote my personal website with advertising, but 1000-1500 visitors come to my site every month to read my articles.  My point is that you can learn a lot from people who have already experienced what you are now experiencing or soon may be experiencing.  If you’d like to check out my website, it can be accessed at www.allansvann.blogspot.com.  On my site you can even see a few minutes of a CBS Evening News interview with Clare and me!

 

9. Travel with your loved one now … while you still can.  At my first spouse support group meeting, I mentioned that Clare and I had traveled a lot and had already placed a deposit on a trip to Australia that we had planned to take in 12 months.  A wise woman whispered to me on the way out, “Allan ... don’t wait to take that trip.  Your wife may not be able to travel a year from now.”  That night I booked a different trip that we took a few months later ... and that turned out to be our last major trip.  Due to Clare’s worsening condition, I had to get our deposit back on that planned trip to Australia.  If you have planned to take any trips with your loved one in the future, please don’t wait too long.  Take those trips now or in the next few months … or, given that I am writing this at a peak time of Covid infections, once it is safe to travel again … because your loved one may not be able to travel a year from now.

 

10.  Check for possible free respite opportunities for yourself

Road Scholar (http://www.roadscholar.org) is the nation's largest not-for-profit educational travel organization. In 2015, Road Scholar created The Caregiver Grant (access information at: https://www.roadscholar.org/about/financial-assistance/caregiver-grants) to provide respite time for family caregivers by providing grants of up to $1500 to help offset costs of an educational travel experience.  Individuals 50 and older living in the United States and currently serving as caregivers ... or caregivers who have lost loved ones within the past two years ... are eligible to apply for a grant, regardless of whether the loved one is receiving or had received home care, adult day care, hospice care, memory care, nursing home care, visiting nurses, or comparable or related services. 

Caregiver Grant recipients are responsible for their own transportation to and from their travel destination, but Road Scholar will cover all other costs ... accommodations, meals, taxes, gratuities, a travel protection plan, and any fees for lectures and activities up to that $1500 amount.  Specific information about Road Scholar caregiver grants, including application forms, may be found on their website.