Sunday, February 12, 2017
Gone is the mischief....
Its been quite a few days since I have seen Gary awake. He is medicated and every time I go to see him he is either sleeping in his chair or napping in bed. Apparently his seizures have stopped and he is peeing normally again. I don't stay very long as I don't see the point.
There is not much to report. Gone is the mischief he could create. Gone is the loving and tender conversation. He is still somewhere in that broken body but the personality is not there. He is dying a very slow death.
Meanwhile, my Dad is also in intensive care in a hospital in Virginia and has refused the doctor recommended treatment. His days are numbered.
I was thrilled when 2015 was over as it was such a horrible year. 2016 was incredibly taxing. 2017 seems to be shaping up to have several incredible adventures. Only time will tell.
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.
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.
Wednesday, February 8, 2017
https://www.classy.org/fundraiser/897965?is_new=true
Please consider giving to fight FTD. My goal is to raise $5000!
Please consider giving to fight FTD. My goal is to raise $5000!
My family has suffered from this horrible disease. Please consider supporting my fundraiser for AFTD's With Love campaign. Together, we can #EndFTD!
classy.org
Sunday, February 5, 2017
Gary's Roller Coaster Life
This week has been a physical roller coaster for Gary. One evening he did not know me. One evening he knew me but I am convinced he didn't know our relationship. Then, on another occasion, he said my nickname "Ada Potata" out of the clear blue.
He has started seizing/tremoring again, not just at night but also during the day. The Hospice Doctor has decided to triple his medication. He has stopped the tremors but it has been reported that despite pushing significant liquids, he is awaking in the morning with dry diapers. He seems to have normal bodily functions during the day so we are not sure if he is holding it and maybe has some awareness. He cannot communicate so we will not know. All angels/caregivers are aware and staying alert to any signals.
Meanwhile, I am doing fine. In fact, better than I have been in years. Despite Gary's condition, I am able to focus, started a Doctor Prescribed Diet and feel great. Some may find it hard to accept that I am moving on with my life while Gary is alive. He is being well-cared for and is safe. For now, that is all I can do for him.
He has started seizing/tremoring again, not just at night but also during the day. The Hospice Doctor has decided to triple his medication. He has stopped the tremors but it has been reported that despite pushing significant liquids, he is awaking in the morning with dry diapers. He seems to have normal bodily functions during the day so we are not sure if he is holding it and maybe has some awareness. He cannot communicate so we will not know. All angels/caregivers are aware and staying alert to any signals.
Meanwhile, I am doing fine. In fact, better than I have been in years. Despite Gary's condition, I am able to focus, started a Doctor Prescribed Diet and feel great. Some may find it hard to accept that I am moving on with my life while Gary is alive. He is being well-cared for and is safe. For now, that is all I can do for him.
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