• Kerry Nagel

when to tell

I was on an online forum the other day, reading about a niece who was upset that her aunt had not told her kids that she had recently been diagnosed with Alzheimer's Disease. Her two points were that her kids had "the right" to know, and that they also had money, and could help in that way.

I had two immediate responses.

The first is to say that Auntie's diagnosis is hers, and hers alone. It is up to her when and with whom to share that information. In early stages, the person with dementia (PWD) has enough on his/her plate just trying to wrap their own head around the news. This stage takes time....the same time any big diagnosis deserves.

There is a change that happens to many relationships when a dementia diagnosis is announced. Friends and family, all well-meaning for sure, change the way they are around the PWD...they become softer, kinder, maybe even slowing their speech, etc. This is a lack of education, nothing more, but it can feel very degrading to the PWD. Alzheimer's can be a slow moving disease, and the PWD may have many good years still ahead of them. The pity party can wait. There is still living to do.

The second point I would like to make is that, DOES help. Caregiving for dementia is not considered "skilled care" (I roll my eyes at that one often) and is not covered under insurance. The family will pay out of pocket for home care, and if they try to do it alone, they need to be very organized and have a big circle of people willing to help as the disease runs its course. The best use of money in the beginning is to hire a dementia coach/navigator or begin taking classes, watching videos, reading, etc to get familiar with the disease. Knowledge is so helpful. It enables families to think and act proactively, which makes all the difference. SO much can be done those first few years to set the PWD up for a life that is as rich as possible. There is really no need to sit home and wait for the disease to have its way with you. Again, I say, there is still living to do.

By the time someone is diagnosed with dementia, they have probably already had it for years. Please allow your PWD to take their time in deciding who to tell and when. Offer support in the way of helping them to write down the things they wish to convey, maybe even roll-playing a bit. Others will benefit greatly by being told in a balanced way and by being given a bit of direction as to how they might help.

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