Lessons learned Mom's stroke, husband's Alzheimer's & Step-Dad's stroke

SDianeL

WARNING!! LONG POST. I've been thinking about this lately. I remember being lost and overwhelmed after my Mom's stroke several years ago, my husband's diagnosis of Alzheimer's 4 years ago and my Step-Dad's stroke last November. Some I learned through the school of hard knocks & some I learned on this forum. I hope this info helps someone. Note: I am not giving legal advice. See an attorney. This is just what I learned. Hope it helps someone. I welcome any feedback or corrections.

1. Get your legal affairs in order NOW. Don't wait. Make an appointment now with an Elder Care or Estate Attorney. I was advised by my brother-in-law to get these documents done asap. I'm glad I did. Within 6 months my husband could no longer read & understand documents or sign his name.

You will need for each person:

* Durable Powers of Attorney-Finances - wide range of legal & financial matters.

* Durable Power of Attorney- Medical - when you are unable to make choices about your care, appoints an agent to make decisions for you when you cannot.

* HIPPA forms to access and receive your health information records.

* Living Wills - outlines a person's wishes for medical care in the event they become incapacitated

* DNR - Do Not Resuscitate specifically addresses whether or not cardiopulmonary resuscitation (CPR) should be administered if the heart or breathing stops. States my have their own DNR's. Many doctors have these available to sign. Place the DNR on the refrigerator.

* Wills

2. If you or your loved one (who is able to make decisions) are receiving Social Security, you can go online and set up Advance Designation and you can name up to 3 people to manage your benefits. Your first designee will become the Representative Payee if you are unable to manage your benefits.

Note: Social Security does NOT accept a power of attorney.

3. The VA will accept a Durable Power of Attorney for Healthcare. The VA has their own Fiduciary Program & will appoint a fiduciary after receipt of medical documentation or if a court of competent jurisdiction has already been issued. Generally, family members or friends serve as fiduciaries for beneficiaries.

4. Getting the completed powers of attorney to health care & financial institutions is cumbersome. Make extra signed copies as you may need to mail them or drop them off in person. Emailing them I found was very cumbersome.

5. If your loved one has a stroke, is diagnosed with dementia or Alzheimer's, Medicare does NOT pay for long term care. Medicare generally pays for short-term rehabilitation in a skilled nursing facility (SNF), but it does not cover long-term custodial care for daily living activities or permanent nursing home stays.

To qualify for Medicare coverage, your loved one needs a doctor-ordered, medically necessary stay for rehabilitation after a qualifying 3-day inpatient hospital stay. Then, Medicare covers up to 100 days in a skilled nursing facility (SNF) per benefit period, but the length of coverage depends on specific criteria including a qualifying hospital stay and medically necessary skilled services. For the first 20 days, Medicare pays 100% of the costs. From day 21 to day 100, you pay a daily coinsurance amount, and after 100 days, you are responsible for the full cost of care which can cost between $6000-$15,000 per month.

If long-term care is needed, Medicaid is the program that typically provides coverage and you must qualify financially. Medicaid is administered by each state and their rules vary. See an Elder Care Attorney for the rules in the state your loved one resides.

In some states you can qualify for both Medicare & Medicaid at the same time.

6. You will most likely not be able to care for your loved one by yourself without help from family, pay for in-home nursing care or pay for a nursing home or memory care facility. Caring for someone at home is a 24/7 job because many with dementia & Alzheimer's don't sleep all night. Caring for someone full time is mentally & physically exhausting. So have a Plan B. I was advised by my daughter-in-law to do that and I was probably in denial and thought I had plenty of time.

7. If your loved one is diagnosed with dementia, Alzheimer's, Parkinson's or any other neurological progressive disease, learn all you can about caregiving for dementia & Alzheimer's. Alz.org has an online community and toll free number. There are many online videos for dementia caregiving. The book "The 36 Hour Day" also helped me.

8. Dementia, Alzheimer's & Parkinson's Dementia are progressive diseases with no cure. They are terrifying and heartbreaking diseases. Pray for a cure. 🙏💜

cdgbdr

SDianeL

This is valuable advice/information. I am very thankful for all I learned here. Without this site, I fear that I would not have been prepared for my current situation. Denial is natural and easy. I hope that DH will admit to MC next week. This is not what I would have initially planned but I think it's best.

Thank you for sharing this.

SusanB-dil

Whew! Yes and yes on all counts! There is so very much involved, and so much to think about and consider. You've got it pretty much condensed, here. All of it so very, very important.

Thank you.

Jgirl57

Great post!

H1235

That was a great summary. I have just a couple of things to add. Facilities can have a waiting list, so plan ahead. I would also recommend keeping legal documents along with a current medication list (even if your loved one is in a facility) at your fingertips.

Michele P

Thank you so much for this post. It was extremely informative. A few other suggestions to add which came from family members who were caregivers:

Write down big decisions as far as what your loved one wants or doesn’t want- feeding tube etc. Include what your loved one wants for his or her funeral. Have the document signed by your loved one and notarized. If possible, preplan the funeral. Make a list of all accounts in your loved one’s name along with account numbers and online log in and passwords. This includes phone and computers. You will have to take over all finances.
Tour facilities for assisted living/memory care and get on a waitlist asap. Make sure the deposit for the waitlist is fully refundable or credited towards your account.
Write down notes for doctors to give them information that you don’t want to say in front of your loved one. Hand the note to the doctor at the beginning of the visit to read. Your loved one’s sense of reality and the truth are two different things.

harshedbuzz

Great checklist.

In the context of writing your own Advanced Directive or acting as a medical POA for someone else, it's critical that you understand what the end stage of any progressive condition looks like as well as the realities and consequences of medical testing and interventions. There's no point in routine screenings for someone at a certain point in dementia if a positive result would lead to further intensive testing and grueling treatment. Related to that, it's important to remember that some interventions like CPR or feeding tubes can do more harm without any benefit.

I like these 2 books ahead of making these kinds of decisions. I had my mom read both before we wrote her Advanced Directive.

Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures, and the Patient with a Serious Illness, 6th Ed.: Hank Dunn: 9780997261202: Amazon.com: Books

Amazon.com : being mortal book

HB

SDianeL

https://alzconnected.org/discussion/comment/252094#Comment_252094

thank you. I wish I had read those before my husband passed. Although I knew his wishes I doubted my decisions. 💜