Memory Test struggles

thill1856

My wife was diagnosed with early onset about 6 months ago, although I had been noticing problems and changes several months before that. She is currently receiving monthly Kisunla treatments - she's had three so far. At her last treatment she was given a "memory test" - she was asked several basic questions (what State do you live in) and some more difficult ones (spell "World" backwards). She got less than half correct. This is when her diagnosis really hit home for me, although they said her test score was the same as three moths ago - so no further progression. I am worried and stressed about our life as the disease progresses.

blacksparky

Welcome to this forum and sorry that you have to be here. This forum has helped me with my DW who was also diagnosed with EOAD at the age of 53. She is now 56 and has progressed to late stage 5 now. If it wasn’t for all the great people here I would have been lost. There is always someone here that is in your situation or has been in the past. Although every patient progresses differently with varying problems, there is always someone that gives me advice that helps. All I can say here is the disease is not going away and you need to research every article and books out there to better equip you for this terrible journey. Get all your financial and medical powers of attorney done now while your DW is still able to understand what is going on. A small investment with an elder law attorney is well worth the money. Don’t hesitate to ask anything or vent anytime. We’ve all been there. I am part of a monthly zoom call just for men that have wives with EOAD. It’s called Lorenzo’s lighthouse

https://na01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.lorenzoshouse.org%2F&data=05%7C01%7C%7C0089949593fe441763e908db45bd8aa6%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C638180452591348628%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=%2B6ch3LThjiHtn3Qo0MmbBrxlXTDvVxlHxF7os9%2Bg%2B%2Fg%3D&reserved=0

Timmyd

My DW was diagnosed with EO at age 57. 4 + years later she is in early stage 6. For me, the stress was the worst going from the early to the middle stages. The anxiety and depression was bad. As we got to the later stages, the work is harder, I feel more isolated, but I am far more accepting of our condition. I no longer "freak out" when I see her losing some other capability. I have accepted the inevitability of decline. I focus more on those things in my control and don't really get as bothered by the parts of the disease I cannot control.

Vitruvius

First let me stress that you should make sure your legal affairs are in order. DPOA and HIPPA release are super important. A living will should be done so you know what your DW’s wishes might be for the very late stages. Wills and trusts as well.

So my DW was just about the same place in her EOD (Semantic Dementia in her case) around the time the reality of it really hit. These tests (MMSE, MOCA, SLUMS) are not that fine grained and I would say that 3 months is not a lot of time for tests to plot a decline. I would urge you to begin a journal and make frequent entries about things you notice, otherwise it’s hard to really understand the rate of progression and will allow you to give more accurate timelines to her doctors. Also every day is different and certain behaviors will come and go. For instance my DW began not always recognizing me as her husband. At first occasionally, then more often, and finally not recognizing me all the time, until much later, beginning of Stage 7 when she seemed to occasionally recognize me again and use my name and refer to me as her husband again (weird to do so after several years).

There are many resources here about Stages. And although your spouse’s journey may differ, especially depending upon exactly what type of dementia your DW has, the general decline is pretty much the same. Hopefully the new treatments will have some benefits. They came too late for us, she is now at the very end as we wait for the final off ramp.

SDianeL

Welcome. So sorry about your wife’s diagnosis. As blacksparky said, learn all you can about the disease and caregiving. Start with the book “The 36 Hour Day” and search online for dementia caregiving videos by Tam Cummings and Teepa Snow. They will help you help her. We know what you’re going through. 💜