New to Group

Michele P · August 24

I am new to this group. My husband has been diagnosed with Alzheimer’s. I am grateful for this group support. We are hours away from family, and I am on my own navigating through this. My husband is a disabled veteran rated at 100 percent. Rating allows for covered in home care.

Chris20cm · August 24

Welcome Michele! You are in a good place here with many others who, bless their hearts, are rising to this unusual and unexpected challenge. You will get some excellent suggestions here, and stories of things that have worked well, and some that have not, all of which usually contain valuable insights gained through trial and error. Every case is different, but there are many similarities also.

Ask whatever questions you like, and as they say in the 12 step groups, "Take what you like and leave the rest."

You are in good company.

Michele P · August 24

Thank you, Chris.

Chance Rider · August 24

Welcome, Michele, though I’m sorry for your husband’s diagnosis. I’m new here myself and find this a very welcoming, knowledgeable and supportive community. My husband and I are also hours away from the few family members he has. This community helps me feel less alone and isolated.

My husband’s diagnosis and disease management are through the VA as he’s also a veteran.

We’re here to travel this journey with you.
~Eve

Michele P · August 24

Thank you, Eve. Make sure to talk to a social worker about everything that is available for your husband’s care. We also have a geriatric team who handles his care. You might qualify for care giver as well as aid and assistance for in home care and long term care in a VA facility. Go on the Elizabeth Dole Foundation website. There are excellent resources there for families of veterans. If you are ever not happy with the medical care provided by the VA, talk to a patient advocate and request community care. I had to do that already!

Chance Rider · August 24

Michele, thank you so much for the great advice!

My husband was only awarded VA benefits late last year so I’m still learning and navigating what’s available. He’s “only” at 60% so I believe some resources are limited. I’m certainly going to check out the resources you mentioned. So far, I’m pleased with the quality and timeliness of his care. The neuropsychologist and neuropsychiatrist were both associated with a VA memory disorder facility over 3 hours away so they met our needs by doing video assessments initially. There’s SO much to navigate through with the VA. All this, on top of the ALZ diagnosis, can be overwhelming. I really appreciate your input!

Michele P · August 24

Feel free to reach out with any questions you might have about the VA. Talk to a social worker and a local Veteran Service Officer asap to find out exactly what you are entitled to with your husband’s rating.
Find out if his medication costs are covered. Ask if any in home care/long term memory care or alterations to your home for his mobility or safety are covered. My husband has a primary care physician. speech therapy, occupational therapy, a nurse assigned to him, neurologist, therapist, psychiatrist. You will need a psychiatrist in place who can write a prescription for medication if necessary. The primary care physician and neurologist will determine what level of care he needs.

l7pla1w2 · August 24

I must say, I am very impressed with the level of care you are getting from the VA. A friend of mine also likes his VA medical care. I know many people on this discussion group probably wish they could get such care for their LO.

Michele P · August 25

I have had to fight tooth and nail for my husband’s care. It took a complaint to the patient advocate to get any services. We had to request community care to get a neurologist who would show up for an appointment and order basic tests to diagnose the disease.

Chance Rider · August 25

Initially it took my husband a couple of years to be declared 60% service related disabled. Once we suspected cognitive decline things moved pretty quickly. He had an MRI the end of March; the first doctor interpreted the MRI as showing normal age related decline. I disagreed and we were immediately referred to a neurologist. She spent about an hour evaluating my husband and then she referred us to the neuropsychiatrist and neuropsychologist who provided the ALZ diagnosis during the evaluation. He had an MRI blood test to screen for ALZ about 1 1/2 weeks ago, we don’t even have the results back yet but the neuros aren’t waiting around.

There’s one immediate accommodation I need to make for his safety and will check with the VA to see if it can be a covered service.

His meds have been covered by the VA for a couple of years now.

Michele, thank you so much. I can’t express how grateful I am for your guidance.

l7pla1w2 - I feel very fortunate for the care my husband is receiving. Living so rurally as we do, private sector care could be very hard to get as well as expensive.

~Eve (aka Chance Rider)

SDianeL · August 25

welcome Michele. Sorry about your husbands diagnosis. I don’t know what I would have done without this group. They helped me so much. My husband was a Vietnam Vet and received excellent care from the VA. It did take awhile to get the diagnosis but after that it was good. The caregiver support really helped. I had planned on keeping my DH at home as long as I was physically able but in late 2023 I was diagnosed with aggressive cancer and had no choice but to place him in memory care. I placed him in a nearby non-VA facility which was extremely expensive. Then I began the process of applying for care at a VA facility. That process was awful and took 2 months. It was worse because I was going through chemo at the time. I recommend you have a Plan B and complete paperwork and getting on a waiting list at a facility. The VA memory care facility my husband was transferred to was excellent. Other things that will help: read the book “The 36 Hour Day” and search online for dementia caregiving videos by Tam Cummings and Teepa Snow. Come here often for info, support or to just vent. Everyone here understands what you’re going through.

Michele P · August 25

Thank you so much for your advice. My husband and I have been touring memory care facilities and will get on a wait list of one or more. The nearest VA fully funded facility is hours away. The waitlist is years! I can’t imagine going through this and cancer. I am a 25 year survivor. I wish you all the best. Take care and be well.

Michele P · August 25

With the 100 percent rating, we are given up to $6,500 to cover any improvements to our home, car etc that are necessary for my husband’s safety and care. This is over his lifetime. They also cover transportation to and from VA or approved community care appointments. This is door to door service.

Chance Rider · August 25

With my husband’s 60% rating we’re able to receive his meds at no cost, door to door travel mileage and of course access to his care providers. In the long run, access to a memory care facility would be beyond anything I could hope for. Even help with a once weekly in house caregiver would allow me to grocery shop, attend my own dr appointments, etc. I have a feeling I’ll get better at asking for help.

SDianeL · August 25

https://alzconnected.org/discussion/comment/251616#Comment_251616

Check with your county's Agency on Aging. They may have respite help or day care available.

A veteran with a 60% disability may be eligible for a VA memory care facility if they are also deemed unemployable or permanently and totally disabled, in addition to needing nursing home care due to a service-connected disability. However, eligibility for VA memory care also depends on other factors like the need for assistance with daily activities and the availability of services.

To qualify for VA nursing home care, including memory care, a veteran generally must meet one of the following criteria:

Need nursing home care due to a service-connected disability .
Have a combined disability rating of 70% or more .
Have a disability rating of at least 60% AND be deemed unemployable or permanently and totally disabled

Also, it might be worth checking into the VA Catastrophically Disabled benefit as the disease progresses.

Here's the link. https://www.va.gov/healthbenefits/resources/publications/IB10-435_Catastrophically_Disabled_Veterans_08192022.pdf