Friday, January 21, 2011

Care-giving After Your Loved One Dies

Care-giving and advocating do not end when the loved dies.  The care-giving needs to be for yourself and the advocating needs to be for both yourself and the deceased.

It has not been so long ago since my dad died. It was just last year and only months before I became sick.   There are still issues mom and I need to resolve in dad's estate.

But, in the meantime, my mom's best friend lost her husband from diabetes.  It was a horrible death.  He was a terrible patient.  Doctors actually dumped him months before his death because he was old and grumpy.  I would have been too.  He had multiple system failure (heart, lungs, kidney).  

I recall trying desperately (in October 2010) to find Rana a physician who would help him. A kind physician agreed to treat Rana. But Rana left us and joined God during a dialysis treatment.

Rana was from India.  He was a permanent resident but chose against applying for U.S. Citizenship.  When I practiced immigration law, I offered to help him pro bono but he declined my offer.  His wife Pramilla accepted my offer and is a U.S. Citizen.  

Now I am helping Pramilla (a widowed naturalized U.S. Citizen with no dependents) deal with the aftermath of a death post years of 24/7 care-giving.  My initial help to Pramilla is instructive generally.

Autopsy? Best to think about at the time of death
If your loved one is under the care of a physician at a major teaching hospital then it is likely that a complete autopsy can be done at no expense to the family.

My dad was being treated at Duke University Medical Center at the time of his death.  Duke did not offer the autopsy.  But I made the request to Duke and I am glad I did.  The autopsy answered many questions for our family.  Dad was cremated.

If the deceased was a recent patient and the family is interested in an autopsy, ask the funeral home whether the medical facility will perform an autopsy.  The funeral home will know (or find out) that information.  The funeral home needs to know if you are interested in an autopsy before they embalm.   

Remember, you don't have to read the autopsy results today, this year or next year or ever.  But you have the results and that is very respectful for the deceased.

The first and most thing to remember is that the shock Pramilla will feel is different than the shock of a sudden, unexpected death of a loved one.  Pramilla grieved the stages of death throughout the care-giving process.  But Rana was alive and there was always hope.  And there was always Rana.

Pramilla's shock is combined with battle fatigue and a type post traumatic stress syndrome.

Battle Fatigue
After years of care-giving, Pramilla is completely worn out.  The feelings are very similar to battle fatigue.  

With respect to my caring for dad, I specifically recall learning to sleep lightly. I would be on "high alert"  for any noise my dad would make and I would jump into action.  I expect Pramilla did the same for Rana.  It takes many months to be able to sleep through the night.  For me, the answer was a good psychiatrist. I already had the relationship during my bout with cancer and continued the relationship throughout dad's illness.

Sleep and Meal Routine
Pramilla needs to get herself on a routine as if she were a child.  She cannot wait to eat (a healthy meal) when she is hungry or sleep (in bed) when she is sleepy.  Her body is out of sync.  There is comfort and health in routine. 

When she cared for a very sick husband, Pramilla slept and ate when she could. Cat naps were the routine.  I doubt Pramilla enjoyed a quiet meal.  

Get out of the house  
My mom owns her own business and encourages Pramilla (admittedly her employee but also her friend) to drop by the business anytime just to visit.  

Pramilla needs to get out of the house.  It does not matter whether Pramilla is taking a walk, grocery shopping, visiting with friends, going to church.  The important thing is for her to brush their teeth, wash her face, get on shoes and see people.  It is all about the "life is for the living" thing.

It is okay to cry
Crying is more than okay.  Crying is good.  

Death Certificate and Letters to Creditors
We tried to make telephone calls to all of the utility companies, investment companies.   
1.  Investments were easy because dad put everything in "joint ownership with right of survivorship."  
2.  Our small town utility company was easy. They told us to keep the account in dad's name to avoid the transfer fees.  
3.  AT&T was a nightmare.  I wish dad had put that in both mom and dad's name.  For months, we received two bills, one in mom's name and one in dad's name!  Actually, I am still working on AT&T.
4.  Department of Motor Vehicles was a breeze since dad had the cars titled in both names.  
5.  Home, Auto, Health Insurance was a breeze since dad had the names in both.
6.  Bank Accounts were in both names with right of survivorship.

Pramilla's husband Rana did not have the foresight of my dad.  The accounts were not in both names. She will have a bit more trouble.  She will need a good certified copy of the death certificate to send or hand to each creditor.

Pramilla and Rana also just purchased a home.  My parents no longer have an active mortgage.  But she will need to deal with the mortgage.

Canadian Citizenship
Rana was a Canadian citizen.  I will help Pramilla check with that Government to access whatever death benefits she is entitled to receive.

United States Social Security Administration
I will grab my walker and accompany Pramilla to the SSA because no one should have to deal with that agency themselves.  As is typical, Pramilla received the two seemingly contradictory (but absolutely confusing)  letters.  

One SSA letter says she gets about $255 for death benefits.  But the first letter does not make it clear that it is a one time payment.  Then the second letter explains how the SSA is taking back money and the widow must wait about six weeks to get a penny.  Get a friend to go with you to the SSA and have them explain the benefits.  If you can understand the SSA letters, you are still in shock.

Do not make any major life decisions for one year
I am a strong believer that a survivor of a death post 24/7 care-giving should not make any major life decision until the completion of one year.  The person is not simply grieving the loss of a loved one.  The former caregiver needs to heal from the stress and wear/tear of 24/7 wear-giving.

It does get better
After a year, my memories of my dad have changed.  The primary memory is no longer the day he died. The day my dad died was just one day in a lifetime of memories. Now I remember and think about the great times with my dad.  I think dad would prefer that.  

And someday Pramilla will be able to think about great memories of Rana before she thinks about the sadness.  I hope I can help my friend with that journey.

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