Terrified of what's coming

Hello, @mariana739 My name is Scott and I was my wife's caregiver during her 14+ year journey. I know how frightening those early days can be!

I'm only a caregiver and not any kind of medical professional, so I just offer what I learned from our experiences.

There were meds that seem to extend plateaus with dementia patients. This can help prolong their abilities at a certain point, which can be helpful. As to side effects, I only say to remember they list all the possible side effects that anyone could have, not that are inevitable. My wife's point of view was to try the med and then see if there were any ill effects and if I witnessed any benefits. Of her various meds, I can recall only one with a side effect that made her quit, which was nausea.

I'm glad you found the support of Mayo Connect! The sharing and support I got here was a huge help to me, also a sole caregiver.

Strength, Courage, & Peace

We are just starting down this path…hopefully ours will be a slow walk. So I have no advice, only sympathy. We, too, are skeptical of trying drugs. Even the neurologist said “you can try xyz if you want,…..” Not a vote of confidence for the meds….best wishes. This group is wonderful!

Some people do have wonderful results for months on some meds. Most drugs can be taken and, if need be, due to side effects, can be ended with little to no after effects (may have to be weened gradually) in the long term. Looking back I wish I had been willing to try a couple for my husband.
The doctor is respecting your right to make choices. Some meds only work for 16% of the population, but it is your decision. It isn't like needing air in order to live; it's how long you may have quality of life!!
It's always a tough choice due to so many unknowns.

I 100% agree with Ann on her post. Quality versus Quantity. I think all of us know which one we’d choose. You have a long road ahead and know Prayers are headed your way. Some decisions are hard to make and this is one. Since it’s an early stage, ask what their choices would they want. No one ever thinks it won’t happen in their family but unfortunately it happens more than others know. As well, know the “ Mayo family” is here for you to vent…David

Thank you David, from the bottom of my heart.
I know that this journey is just starting and it's different for every person with that awful illness, but one thing is for certain: it's never easy.
I'm so glad to have found this group of people who understand me because they traveled or are traveling the same path.
I'll be talking to you all frequently I'm sure, God bless you all 💕

We just had a long talk with our daughter in law who is a practicing Psychiatrist to ask her opinion on the effectiveness of the pills. In a few words her advice is to try them and if the side effects are noted just quit them, of course under medical supervision. But there is not enough evidence as to what is the efficacy.

Thanks a lot for your understanding Scott.
Your wife was very lucky to have you during that long and hard journey.
I just pray that I can find that kind of compassion within me when the time comes.
God bless you💕

Remember, there is always an exception. When times get rough you may want to rethink that. Good luck.

Thank you for presenting another way of looking at things. This makes great sense to me. Neuro appointment this coming week and I will go in with an open mind.

Thank you! I certainly shall.