My husband, Rodney, a two-tour Viet Nam Veteran who is 100%
service-connected disabled, deserves all of this noted support... and such much
more.
Please allow some time to read this letter. It is a lengthy
(but not exhausted) description of the process I have undertaken to get proper
care for a Veteran who needs it dearly. Thank you.
______
The White House
1600 Pennsylvania Avenue NW
Washington D.C. 20500
ATTN: Michelle Obama
Dear First Lady,
I know that a cause close to your heart is this nation’s
veterans.
I have a story for you about my husband who is a Viet Nam
combat veteran.
His name is Rodney A. Tarleton and my name is Karen Tarleton.
In January of this year we celebrated our 32nd wedding anniversary.
Rodney is 61 and I am 52.
Rodney served in the ARMY from August of 1967 to April of
1970; most of that time was in combat in Viet Nam.
He is a 100% service connected disabled veteran due to PTSD,
severe depression, chronic pain, internal derangement of the left knee with
traumatic arthritis, post-left knee replacement, degenerative joint disease of
the lumbosacral spinal area and unemployability. He was found to be Permanently
And Totally Disabled as of September 2001 through the Department of Veterans
Affairs.
He was diagnosed with Alzheimer’s disease in 2006 and the VA
later changed that diagnosis to early onset semantic dementia. His speech is
greatly affected and the little speech he can utter has been medically deemed
“meaningless.” I believe that this was a direct effect of his military service
and I have done extensive research confirming that fact. Although the
disability of dementia did not occur during his military service there is
extensive research that has been done and is still being done by various
doctors and numerous institutions (some even from the VA) that show that the
affect of military service directly relates to PTSD, depression and chronic
pain that follow combat military service. Other studies can confirm that the
early onset dementia that my husband has been diagnosed with occurred because
of extended self-medication through the use of alcohol and drugs that were
consumed to deal with the service connected PTSD and depression that happened
during the years he was in service for the United States of America during the
Viet Nam war.
I filed for Aid & Assistance from the VA for help with
this in March of last year and was denied in September and filed an appeal in
October. This issue is still pending with an average wait time of 175 days for
Phase 1 (Open & Development), then 70 days for Phase 2 (Decision Making), and
then 7 days for Phase 3 (Notification). At the time of applying for the A&A
I was told by a veteran’s service officer that this would be an amount of
anywhere between $1600.00 and $1800.00 monthly to help me cover the cost of a
nursing home or assisted living facility. I have since discovered, through many
phone calls and appointments with other veteran’s service officers that this is
not in fact true since Rodney is 100% service connected disabled veteran and
already receives the maximum amount of disability compensation. Therefore, he
is not entitled to A&A or at least not nearly the amount I was originally
told – but no one can tell me that amount. Some say Rodney will not receive any
A&A and some say maybe $200.00 monthly. Again, it is nearly impossible to
get one, true answer and there hasn’t been any consistency from the many phone
calls and personnel I have contacted.
Another point I want to share with you: I requested that the
VA name me his fiduciary in October of 2011 since he was found incompetent
during the compensation hearing for the A&A; again, I have still not
received any answer on this.
After his diagnosis things weren’t too bad – he still could
function pretty normally in most areas of his life. As time went on his
condition worsened with each day. I was forced to quit my job and become his
full time caregiver almost 3 years ago. I have not been able to leave him alone
for over one year.
With the help of the VA I was able to get in home health
care for 2 hours per week, twice a week. This helped to give me a bit of a
break but I used those 2 hours to grocery shop, get dog food supplies, check
out potential nursing homes, etc. Rarely was I able to use this time for myself
as needed rest and recuperation. Needless to say, I became a very tired and
overwhelmed caregiver and I believe there are tens of thousands of people out
there in the same situation.
I knew there would come a day that I would no longer be able
to take proper care of him so in July of 2011 I stared the process to find a
nearby facility. And thus starts this staggering process which I am now calling
“Plan A.” Numerous phone calls, visits to the facilities to tour them, checking
out their ratings, navigating through the many channels of the VA – this
process has been beyond difficult. Late into my research I discovered that in
order for the VA to absorb the cost (since he is 100% service connected) the
facility had to be a nursing home designated by the VA as a VA contracted
facility – and not an ALF, as I was
earlier told was a possibility.
I was able to find such a facility in our county about 12
miles away. Rodney’s social worker from the Gainesville VA completed all
necessary paperwork and I received approval and brought my husband to the
facility on Monday, March 5, 2012. He was also approved for some much-needed
physical therapy and I kept telling him that was why he was going there. No one
knows unless they have done it how gut wrenching it is to pack a bag for your
loved one, especially your spouse, and drive them to where they will live out
the rest of their days, no longer in the home you have made for yourselves. It
was tearing my heart out but to keep Rodney focused and upbeat I held it
together for him.
The next day when I arrived in the morning to visit with him
he was a bit agitated and angry as to why he was in that place. I called him as
best I could and again reminded him of his physical therapy; he seemed to
understand.
One of the nurses who had observed his agitation explained
to me that this was a natural and very normal reaction, that it would take a few
days or a week or so for him to adjust, and that I should leave the facility
and not return for a few days so that he could get used to them taking care of
him instead of me. She said she had been doing this type of care giving for
over 22 years so I heeded her advice.
On Wednesday morning at 11am the facility called and said
Rodney was very agitated and asking for me and that he had attempted to leave
the facility several times and set off his wander guard alarm and that I should
come to the facility, which I did.
I was able to calm him down once again and he seemed to
understand why he was there, he even laid down on his bed and fell asleep. He
slept for only a few minutes when the speech therapist came in and told him it
was time for speech therapy. About 15 minutes later a woman came into his room
and asked me to accompany her to the social worker’s office.
The social worker informed me they were discharging him from
their facility because he became agitated in therapy, acted out and threatened
to hurt himself. Please know that Rodney does NOT have any history of suicide
attempts or any history of harming anyone. In my opinion he was just acting out
in frustration, remember, he has semantic dementia and his speech has been very
affected so speech therapy is his hot button.
I think that the therapist should have redirected his
attention and stopped the therapy but I do understand that the facility is not
a mental health facility but they accepted Rodney with the full knowledge that
he had dementia and they have other dementia patients. I find it hard to
believe that he is the first dementia patient to get angry and act up.
Now this is when the still ongoing battle started which I
have called my “Plan B.” They released Rodney back into my care. I have since
found out that this is not the proper way to discharge a patient. According to
several doctors and other sources the facility is obligated to give me 48 hours
notice so that I can make other arrangements. Or, they should have Baker Acted
him (a Florida legal term for involuntary psychiatric evaluation). If he was in
fact in their opinion a possible harm to himself or others, why would they
think it would be wise or safe to hand him over to me?
I knew I could not bring him home so I drove him to his
Veteran’s Hospital in Gainesville, Florida, to the emergency room where he was
seen by a doctor and a psychiatrist. They Baker Acted him and placed him in a
psychiatric hospital in Ocala where he remains until this day. He has been in a
locked psychiatric ward for 20 nights. I can visit him everyday from 6:30 until
7pm. This is an hour and a half round trip drive to visit with him for 30
minutes.
Now that you have the back-story here is what I really need
you to know. I have been working the phones diligently since the morning after
this happened. I have included my phone tree, which as you can see is extensive.
I am not getting any real help from ANYBODY. The director of the psychiatric
facility referred me to a caseworker there and said she would be the person
working on finding Rodney long-term care placement. That person called me
several days later and told me she turned the case over to a case worker at the
VA. After 3 days she called and said that the social worker at the Gainesville
VA would be handling the placement and when I talked to him he said NO, the
other caseworker is the person that should be handling it and around and
around I go. What a run around! Why has this veteran who so bravely served his
country been abandoned?
I see all these wonderful heroes’ welcomes for the returning
Afghanistan & Iraqi veterans and it makes me cry every time. When my
husband returned from Viet Nam he had tomatoes thrown at his bus and was called
a baby killer. He always felt ashamed. In the 35 years I have known him he
has rarely spoke of his time in the military. It was only after he went through
the VA’s PTSD Program in 2000 that he ever mentioned anything about it, and it
was very little at that.
I live in Citrus County, Florida. There are only 2 VA
contracted facilities in this county, 1 being the facility that he was
discharged from and the other is not a locked facility. Even if they had
availability and were willing to accept him I am fearful that he may try to
leave that facility and they too would discharge him and I would be back to
square 1. Again.
The next county over is Marion County, Florida. There are
again only 2 facilities in that county, both are locked facilities but have no
availability and extensive waiting lists.
As of today after all of MY phone calls I can only find
three possible facilities:
- Lake
City Florida VA Nursing Home. This nursing home is a 2-hour drive
(one-way) from where I live. I also learned yesterday that although this
facility has empty beds they do not have enough staff to fill them because
they have no budget to hire staff. How ridiculous is that? They could help
a veteran in need and employ people
looking for work!
- Baldomero
Lopez State Veterans’ Nursing Home in Land O Lakes, Florida. This nursing
home is a 1 hour and 15 minute drive (one-way) from where I live. This
facility has a waiting list of 50 plus people waiting to be admitted.
- Wright’s Healthcare & Rehabilitation Center in Seminole, Florida. This is also a 2-hour drive (one-way) from where I live and also has a waiting list.
So if he ever does get into 1 of these facilities and I want
to visit and spend time with my wonderful husband, it is going to take lots of
gas and lots of drive time unless of course I relocated myself, which is what I will probably have to
do. I will have to sell our home at a pretty substantial loss due to the real
estate market, pack up all of our belongings including my 3 dogs and move to a
city where I know no one and start an entirely new life. Isolation is the first
thing that comes to my mind. I have “lost” my husband to this horrific disease
and now in order to be there for him and support him and make sure he is
getting the proper care, I also will lose my life as I know it. At the time I
most need a support group of friends and family, I won’t have it.
I am amazed that the VA doesn’t have more options for
veterans that need nursing home care. In all of my calling around I have found
several local facilities that have told me that they want to become VA
contracted facilities but no one in the VA system will talk to them or they
just get bounced around to different people (sound familiar?). If these
facilities are requesting this, why would the VA not work with them on this issue?
My husband’s early onset dementia hit him very young. What
will happen to all the veterans like him in the next few years? I would think
that in the next decade or so there are going to be thousands of Viet Nam
veterans that are going to need nursing home care. Where will they go?
Where will my dear beloved Rodney end up living?
Why can’t the VA approve more facilities to be VA contracted
especially when they are asking to be added to the list?
I ask you for your consideration of this very pertinent
issue and invite you to contact me at ANY time to further discuss my husband’s
case. I know we are only one of the many families who are struggling to find
care for their loved ones.
Rodney served his country. Now it is time for his country to
serve him.
Sincerely,
Karen Tarleton
