Veteran's wife seeks help for husband with multiple sclerosis

September 2, 2013

Dear Sgt. Shaft:

I am writing concerning my husband, an Army retired veteran and myself as his 24/7 caretaker.

The VA doctor and nurse come to the home for his care, but we were told that there is ” ‘no funding’ at Robley Rex VA Medical Center, Louisville, Ky., for the Homemaker or Home Health Aide” program and for the respite care program, because it hasn’t been approved for a number of years, which can help veterans remain living in their own home with this help.

Instead, there is a waiting list, and Terry has been on the list for more than two years.

Why wasn’t it approved? I sent this letter to many and have not received any answers. Terry went from a Private, PFC, Sergeant E-5, Special Forces to OCS school when the Vietnam war started, then retired from the Army Reserves in 1994. He served full time from 1961 to 1968, and he served in the Reserves 1969 to 1994.

Terry has severe multiple sclerosis (MS), diagnosed in 1983 when we lived in Buffalo Grove, Ill. He had a severe exacerbation in 1999 and has been in a wheelchair since.

In 1983, Terry was in the Army Reserves and at the two-week summer training camp at Fort McCoy, when the MS symptoms began.

Looking back over the years, he had eye problems in 1968 or 1969 (could have been MS symptom), but the doctor said it was probably due to stress. There is no proof of the doctor visit. He left the Army in 1968 and joined the Reserves. He retired from the Reserves in 1994.

Terry combined seven years of military duty and Army Reserve duty to be able to receive his Army retirement. He’s unable to walk, but he uses a power wheelchair to get around, unable to use his right hand, and has had to learn to use his left hand but barely can use it.

Unable to use a regular bed, he sleeps in a recliner lift chair. With the lift chair, he can stand holding onto the power chair, barely turn enough then fall back into the power chair. He puts all his weight (170 pounds) on his left arm and hand on the wheelchair arm to raise himself up, but he can barely do this. …

When he was in the hospital a couple years ago, he had to be in a bed and be turned every two hours due to no muscle tone. I don’t know how much longer his strength will last; he seems to be getting weaker. He’s unable to sit in his power chair for a couple hours. He wants to go back into the recliner.

Our social worker said he could go to the Veterans Administration Community Living Center Facilities (one hour away) in Lexington, Ky., and stay there for a few days so I could get away for a for a few days to visit our daughters out of state.

I feel terrible to ask him to go that distance even though it is just an hour away. When going to the doctor, he is exhausted when he gets home. Fortunately, his VA doctor and nurse come to the home now. He does receive regular VA health care.

Also, in 1999 he learned he has Hepatitis C while being treated at the Cincinnati, Ohio, VA hospital. Do you know where we can apply for Home Health Aide and Respite Care grants? The going rate to come to the home is $25 per hour with a three-hour minimum.

He is approved for Aid and Attendance, but he has to be paying out for high medical bills, which this is not the case. He would receive Aid and Attendance if he lives in a nursing home. If he gets any weaker, he will have to live there. …

This link shows what our veterans are entitled to but is not available to our Kentucky vets. My husband and many others have been on the waiting list for more than two years for this help.I called and found that the Home Health Aide program is available at the VA hospitals in Spokane, Wash., Indianapolis, Ind., Memphis, Tenn.

Spokane is where our daughter lives. If Terry could handle it and if I had the money, I would move us there to be near family. Our daughter would gladly help. He then would be able to make use of the veterans health-care benefit for the Home Health Aide and Respite Care benefit he’s entitled to.

Veterans are entitled 30 days a year of respite care (no funds again) but not for veterans who go to Robley Rex VA Medical Center, Louisville, Ky.

According the VA website:

“Home Health Aide Care includes: Homemakers and Home Health Aides are for veterans who need skilled services, case management, and assistance with activities of daily living (e.g., bathing and getting dressed) or instrumental activities of daily living (e.g., fixing meals and taking medicines); are isolated, or their caregiver is experiencing burden.

“Homemaker and Home Health Aides services can be used in combination with other Home and Community Based Services. Homemaker Home Health Aides work for an organization that has a contract with VA. The services of a Homemaker or Home Health Aide can help veterans remain living in their own home and can serve veterans of any age.”

Thank you for any help you can advise.

Sincerely,
Carol H.
Louisville, Ky.

Dear Carol H.:

You raised many interesting points in your letter. I have referred your inquiry to my friends at the Paralyzed Veterans of America, who are known for their expertise these areas.

They will call you shortly to offer their assistance in properly presenting your husband’s claim for establishing service connection for multiple sclerosis and possibly other issues.

I have also sent your missive to the Under Secretary of Health at the Department of Veterans Affairs.

Send letters to Sgt. Shaft, c/o John Fales, P.O. Box 65900, Washington, D.C. 20035-5900; fax 301/622-3330, call 202/257-5446 or email sgtshaft@bavf.org.