Thursday, February 9, 2017

"What is Gary's life expectancy?"

"What is Gary's life expectancy?"  After a week of visiting with Attorney's and VA experts, I found myself asking this question of the Hospice Team.  I had to know for lots of reasons.

Currently, I am averaging around $7400 per month for Gary's care at the Memory Care Unit.  Since June 30 of last year, that is greatly depleting our savings.  One attorney referenced this outlay of cash as "hemorrhaging".  Despite the fact that Gary is getting the best care I can find, it still comes to the fact that I will run out of money if he lives more than a year.  

It is a bitter pill to swallow that he is suffering from Frontotemporal Degeneration and will die.  It is a worse pill to swallow to know that it is SO expensive to keep him comfortable and dry.  One attorney said "You have him at the Ritz...perhaps you should move him to the Hampton Inn?"

So, I found myself face to face with his Hospice Doctor, Hospice Nurse, the Center Case Manager and others from the Memory Unit.  Do I move him out of the area to a less expensive place so the money lasts longer?  Divorce is not an option.  What to do?

So, I very bluntly asked the doctor how long he thinks Gary will live.  He boldly looked at me and stated that he wished more family members would have the bravery to ask.  I stayed in business mode and proceeded with the questioning.

To make a very long, agony-filled story short, the answer was "Ada, he has 4 to 6 months left.  I would be shocked if he is alive on August 1."  The doctor indicated that Gary's brain is deteriorating faster than his body and possibly he might die from aspirating, a stroke or something else.

There it was.

I explained the financial concerns.  I asked about moving him to a less expensive facility.  We talked openly about what is keeping him stimulated and doing as well as he is.  The team felt that moving him would be detrimental and would speed his decline.  They even felt that moving him to another room in the same facility would be negative.  So, I decided to leave him where he is and continue to pay the current amount for the remainder of what is now, a very short life.

I spent the evening thinking.  Today, I called the local funeral home to begin making arrangements now so that I don't have to do things in a hurry later.  We will have a celebration of life when the time comes, not a funeral.  He always said that he wanted part of his ashes scattered over our beloved Yosemite and the rest in San Francisco Bay where we sailed for countless hours.  I will observe his wishes.

It is so numbing to think that all this is really happening.  No one can empathize unless they have lived it.  Meanwhile, I go on each day performing the duties of my job and enjoying the blessings God has bestowed on me and my family. 


  1. Ada, I am so sorry you have to go through all this, but I know you get your strength from prayer and God. You amaze me with all you are able to do and manage so well! Please let me know if there is anything I can do for you.

  2. Would like to know how long you and your husband have been dealing with his disease. Also how his Dr made his short life expectancy. What type of FTD has your husband been diagnosed with and where is he at this point. My husband has been diagnosed with FTD be since10/08. He has been very close to death several times and bounced back. I have come to the realize that know one,not even Dr's know when their time is close,only God and we have to wait until He is ready.

  3. Hello, Gary was originally misdiagnosed but has FTD bv. Hospice is very is very accurate in life expectancy....they just know time frames. GOD only knows....i am sorry for your suffering.

  4. Hello, Gary was originally misdiagnosed but has FTD bv. Hospice is very is very accurate in life expectancy....they just know time frames. GOD only knows....i am sorry for your suffering.

  5. My husband has been on hospice several times but he seems to defy their odds and springs back just enough to not qualify under their guidelines and they have to stop their services. He has been in a nursing home going on five years now. He can fed himself but that's all. He is unable to talk or walk. Doesn't remember anything. What symptoms is your husband displaying?