Not Prepared - A Guide to the Not-Quite-The End of Raising Parents

Here is a little To-Do or What to Expect When You're Aging post for those of you who are interested.  

Summed up:  the Entering a Facility and Medicaid process is slow and excruciating. It is out of our control.  NONE OF THESE THINGS WE ENJOY NOR LOOK FORWARD TO.

In this situation, and all aging parents in skill nursing facilities (SNF), there are many moving parts:

Who is paying?  State? (Medicaid) Federal (Medicare) or Private Pay.  

 What are the Current Issues?  What landed them in a SNF

What are the Permanent Issues?  These are things that cannot or will not improve.

Has the baseline been met?  As in, has the patient gotten to the point of No Improvement?  Because sometimes a temporary stay is enough. However, start working on the Medicaid process even if they return home. Because at that point, it's only a matter of time.

Are there underlying issues?  Mental Health is also considered an underlying issue. These can waver between Current and Permanent.  AND there will be discoveries of issues you are not aware of.  I mention that to prevent others from being surprised.  I knew his medical stuff by heart and there were still things that were discovered.  

Also people have the tendency to Fake It Until They Make It.  Or Mask.  Once they are at the point of being in a hospital or SNF, they are no longer able to mask.  This was a surprise to us.  Expect what feels like a "sudden" decline.  While yes, there is obviously a negative change, what you are seeing is the person's inability to fake it any longer.  Examples: memory, speech or physical loss.

All the Housing/Care Options: 

• Home or Home with a Health Aide either part time or full time. This is almost always private pay and nearly no one can afford that kind of situation.  Medicaid will pay for it in situations.  Also, finding someone consistent is nearly impossible.
• Adult family care homes, basically a boarding home for the elderly that provides some care.
• Assisted Living - independent living but with nursing staff on site and other services.
• SNF - mostly known as nursing homes.  These also have levels of care: rehab, long-term, hospice.
• Memory Care Centers - these are SNF for people with active dementia.  Lock-down facilities and it is permanent.
• Finally, literally, is Hospice.  Hospice can be utilized in any of these situations.                               

This is where I say that commercials on television are so very misleading.  They make is seem like housing is readily available and affordable for everyone.  This is not the case.  We learned that most facilities will work with the family if they know that the Medicaid process is underway; however not ALL will.  AND most SNF's are hospital-like settings, not cozy apartments like they show on television.

This also has to be acknowledged: people who say "Oh, I would never put Mom in a home."  I won't be bold enough to say "Yes, you will" but I will say - gently - You don't know what you're saying.  Caring for an elderly loved one is exhausting and sometimes impossible.  As much as you don't like it, it is necessary to keep your loved one SAFE.  Most people cannot afford and/or have the needed training, equipment and fortitude to care for a person.

Medicaid:  To qualify for Medicaid, a person has to be destitute or nearly.  An option is to sign over any/all assets that will then be liquidated upon the person's passing.  It feels like not enough people know this. We did not know this  This can leave nothing/little to the estate; so if family members are banking on an inheritance,  this puts it at risk.

Timeline:  We are approaching 90-days wait for the Medicaid approval.  It's my understanding that this is considered a usual wait time.   The process is painfully slow and invasive. They ask for a ridiculous amount of information. Sing it with me: Please have Power of Attorney and access to financial and medical records.  What is disconcerting is the SNF staff are nonchalant about this process. It is their every day and they're not worried about it. They know eventually the Medicaid will be approved.  Because most likely it will, although it may take several attempts or delays.

The Patient:  The patient, unless legally deemed incapacitated, has final say.  If they are borderline, they can refuse to stay.  The SNF can try to convince them.  They can call EMS to try to convince them, if they try to leave the building unattended. The family can try to convince them.  But if in right mind, they can opt to leave.  Even with a Durable Power of Attorney, the patient has the final say.  To circumvent this situation is very simple: you have to lie.  You have to say it's "only until you get stronger" or "we'll work on that tomorrow" ad nauseum.

The facility encourages us to "join him in his reality" and passively agree when statements about going home are made.  They also said that there will come a time for the family to say "This is your home now" and to expect a sudden decline shortly thereafter.

The Five Stages of Grief is VERY MUCH at play at this point of the process; for the family as well.

Advocate:  Bottom line is you have to advocate.  Advocate for the Medicaid process, advocate for the loved one. Advocate for yourself.   During one financial review (I'm on 2 of 3 now) I had to tell them that this is Daunting, Stressful and placing an Undue Burden on me and the family.  I will say, for me, the tone changed once I said it.  I will whisper-shout to you  that "undue burden" can be a helpful buzzword. Do not allow caseworkers make you do their footwork. Call for an update. Call with Questions. Call to confirm receipt of requested documents.  Request a different caseworker if needed.

Ask the staff of the SNF for help, to answer questions, to provide any available accommodations or services. We have told them "We have never done this before and you have.  Please help guide us through."

This has taken a month to write and has been three different formats and varied topics therein.  I hope that this version is a helpful How To for something you're experiencing or planning for. We thought we were prepared and we were very much Not Prepared.