Get in front of your disease ASAP. Don’t waste time in the denial phase. Those wasted weeks might be the good ones when you look back. You may not want to admit you or your loved one has this terrible disease, but keeping track of symptoms might prove life saving.

Track your medicines. Don’t forget how much you take. Memorize your loved one’s regiment if you want them to live longer. With LBD the tremor medications may end up causing some of the hallucinations. The medicine to treat that may dry your mouth out.

Medicare covers a lot, like wheelchairs.

Assisted Living is not Nursing Care. Assisted living is paying to be treated decently by a for-profit company. For dementia patients it can be a good thing or bad thing. Each center is different. We had a fabulous experience with Plantation South in Dunwoody. His brief stay there looked to be promising. Sadly we didn’t stay long enough to find out.

Nursing Care Appropriate is the diagnosis you want if you’re trying to stress the importance of appropriate care. You could end up in a minimally effective center not equipped to deal with LBD.

Some Medicare Advantage plans are more restrictive on which benefits they’ll cover. Remember Medicare covers certain things no matter what, like hospice care.

Hospice care can be in your own home, in a separate hospice facility, or in a nursing home. They provide another layer of care in the final days.

Enjoy the lucid moments and don’t try to correct them all the time. It’s not important and causes stress to them. Telling them something like “you’ve lived here for years” might have the opposite effect of calming them down. Imagine learning you’ve lived somewhere for 30 years, but have no memory of it. Telling them the little people aren’t there isn’t necessary. They still see the hallucination, regardless of it being imaginary. When it doesn’t matter, let the little person stay.

Medicare covers rehab time, but if you have it through an insurance company they get to set some limits on how you use it. Because my father could walk 400 feet they deemed him fit enough to go home.

Once you go into a home or other facility, often times they take over the medicines. That means you have to use their pharmacy and you have to buy all new medicines, regardless of how new your batch is. We did it three times from three different places. My father was getting one medicine free through a program, but the assisted living facility and not the nursing home knew nothing of it. It was the most expensive medicine too. We never got a chance to work with them on getting the meds from the old provider who honored the cost.

Simple picture books, not children’s books, are good. Pictures with simple captions go over well. Nostalgia magazines exist for every era; buy them.

Machines that were once easy to use become too complicated. Make sure things they once used don’t become covered in dust. Ask about it when you notice unused equipment. My father stopped using his GPS before we took his keys. He said it was broken but he couldn’t work it any longer.

Medicaid takes at least 45 days to process. If you plan on using it file for it early! If all you have is social security and no assets, you may qualify, but some states make it a point of pride to have restrictive guidelines. But a dementia diagnosis is almost a guarantee in some states.

The average nursing home costs over $4500 a month. Unless you’re on Medicaid you must have this amount of money each month to cover time in a facility. Any good one will cost more than $5500 to over $7000.

When do you go into a home? When the one you’re in no longer provides the care you need, you move to the one that can. When my father began showing aggression and confusion over his surroundings we moved him into a home. The recommendation of every health care provider was to get him into a place where he could live a little better and have a comfortable life. While he was still cycling he needed 24 hour care. When delusional he needed nursing care. The place you choose is as important as the medicines you pick.

Bedridden patients are not as desired in a facility. There’s the possibility for bedsores and sepsis.

Catheter patients are not as welcomed. AT ALL!

Lewy Body Patients are beginning to get extra scrutiny. I worry it’ll become a pariah disease. It requires special care, without which only more suffering can come.

I could go on and on, summarizing all the costs and the challenges. But you get the point by now.