Ask the Experts

Husband with Lewy Body Dementia With Parkinson's In Nursing Home. How Can I Bring Him Home?

Learn about in-home care options in PA for loved one with Lewy Body Dementia and Parkinson's, including Medicaid Waiver, visiting doctors, and Medicare-covered hospice houses. Find the best care option for your loved one.

Diane Carbo

05 Aug 2024 — 6 min read

Lewy Body dementia with parkinson's

Question:

Mary asks,

My husband has Lewy Body Dementia with Parkinson's. In November, I had to put him in a nursing home. I hate the nursing home he is in, and so does he.

We only have Medicare and Medicaid, and I haven't been able to transfer him because no one has a Medicaid bed available. I have seriously considered bringing him back home, but I have to have help and have no money.

I am under the understanding that Medicare will only pay for six months of hospice, and I have no idea how long he will be alive. I hope he will be around a lot longer. He has declined a lot in the nursing home. He doesn't walk and dislikes the food, so he has lost over 35 pounds.

It kills me to keep him there. I live in PA. Do you have any suggestions?

Thanks,
Mary

Response:

Thank you for sharing your situation, Mary.

I'm sorry to hear about the challenges you and your husband are facing. Bringing him home is a significant decision, and it's crucial to assess whether you can manage some hours alone, considering in-home care will likely not cover the entire day.

You must also consider the cost of in-home health care. If your husband does not qualify for hospice, I suggest you look into palliative care for symptom management. This is a service that you can initiate while he is in the nursing home as well. This will give you another set of eyes and support when dealing with the nursing home staff. You will also want to look into in-home care services and costs.

Since you're in Pennsylvania, you might consider the Medicaid Waiver program, which can provide some in-home assistance. It would be wise to contact your local Office of Aging to find out exactly how many hours of help you might qualify for.

Given your husband's condition, an in-home care safety evaluation is essential. This can usually be ordered by your primary care physician and should be covered by Medicare. The PA Medicaid Waiver programs pay for care to be provided in the home.

For home care, you might need to arrange for adaptive equipment like a hospital bed, a Hoyer lift, and a portable potty chair, especially if your bathroom isn't easily accessible. Also, check if your home is equipped with a ramp for easier access.

It’s also beneficial to explore if there are visiting doctors in your area who specialize in geriatric and podiatric care—this service can significantly enhance your husband’s quality of life at home. I've worked with several different visiting doctors groups in PA. It makes it easier to have doctor oversight when taking your husband to appointments becomes difficult.

Warm regards,
Diane Carbo RN

More on Husband with Lewy Body Dementia With Parkinson's In Nursing Home. How Can I Bring Him Home?

Regarding hospice care, Medicare typically covers this if a doctor certifies that a person's life expectancy is six months or less. Hospice care can be provided in various settings, including hospice facilities, dedicated units, or at home. Although in-home hospice provides only intermittent support, such as help with bathing and dressing, it could be integrated with the Medicaid Waiver program to enhance the care your husband receives at home.

You also have the option of hospice homes, which might offer a more suitable environment than his current nursing home. Self-referral to hospice is possible, and they can consult your husband’s primary care physician to establish care.

I hope this information is helpful to you, Mary. Please keep us updated on your situation. Remember, you're not alone, and there are resources available to support you and your husband during this challenging time.