What responses have you used when your loved one turns to you and says/asks, "I'm getting worse, aren't I?"

I don't want to lie and say, "No." Saying, "Yes, you are," feels cold. I often try to turn the question back on Jerome by asking, "Do you think you're getting worse?," or, "What makes you ask?" Usually, it gets him talking about his feelings and the original question gets forgotten.

But lately, he IS getting worse to a degree that he really wants an answer and the question is not so easily sidestepped. I don't want to crush his hope, but I also do not want him to start thinking he can't trust what I tell him.

How do you handle it? Thanks ...

Renata,

Can you split your answer by dealing with specifics instead of generalities? "Well, you seem to have more trouble with x these days, but..." followed by several positives?

It's a heartbreaking question to answer. I think it's been over a year since mother was able to articulate such concerns, but tonight when I visited, she seemed so quiet and sad (usually she talks quite a bit even if though the words don't make much sense and fiddles a lot) that I couldn't help but think she may actually be more aware than usual of her surrounds and condition.

Take care,
Garnet

Sometimes I'll answer Lewy does seem more active lately or we'll put it on the list for the Doctor. Sometimes we do try to talk about the future. Over a period of time she has hit the doctors with most of the questions including how will I die. They've answered her honestly- sometimes I'm not sure how much she retains but then she'll surprise me with a comment - as mixed up as she seems she pretty muchs what will come. Her concern lately has been swallowing - she reminded me that when her throat didn't work anymore she'll die (she already had vetoed a feeding tube).
Jerome may be doing what she does- trying to talk about what's coming- either he wants reassured or maybe reminding you.
Sharon

When Jerome was better, we had many long talks about Lewy, the progression, likely scenarios for his demise. We discussed everything under the sun. I point to that as one of the gifts Lewy gave us -- it led us to open up about a formerly taboo topics that we had never explored.

In the early years, I made it a point to remind Jerome frequently of what the next three symptoms would likely be so when they occurred he would not be surprised or frightened (e.g. hallucinations, incontinence, etc.). That time is long past and Jerome remembers none of it.

In fact, he often forgets he has Lewy -- when he is having a Lewy symptom, he'll often ask why that is happening. I remind him that he has Lewy and he says, "That's RIGHT! That's why I feel (fill in the blank)." Knowing "Lewy" is the explanation gives him relief that he's not just crazy.

I think what he is really asking me with the "I'm worse" question is "When am I going to die." At least that one I can answer with complete confidence and certainty ... "I really have no clue."

That's similar to the answer I give Mother- it's all we can do

Probably none of you would be as dumb as me and make this response, but just in case, don't ever say "Honey, you'll probably out-live me!" That terrified my husband. No matter how confused he gets, he considers me the only one standing between him and all the many things he's afraid of. Melinda

If I so much as sneeze or cough Mother panics. I am guilty about answering with smart alec comments about Lewy. Sometimes the humor works other times it flops.
We are the ones that protect our loved ones -kinda of like caring for a small child. It's funny after growing up the oldest I never wanted children. My friend and lover Tim had children from a first marriage so no problem there.
I now have a large toddler to care for- God does have a sense of humor.
Sharon

Ditto on the advice against any reference to outliving the LO. I've had to stop leaving Jerome at home just to run to the store. I'm not concerned that he will hurt himself or that something will go wrong (he stays in bed if I'm out -- his safe place) -- it's that he is usually in a very high state of anxiety by the time I get home because he starts to worry that something has happened to me, and how will he find out, and he doesn't know how to use the phone anymore except to press a button to dial my cell. My heart just rips when I get back and see what utter fear he is in. Then the anxiety starts to infect me -- "Oh my god, what if I ran to the drugstore and was in a car accident while out, what would happen, who would know to go to Jerome, how will they know about what to do, what he needs?" I have to really get ahold of myself or I start to spiral out into the "what ifs" and that does neither of us any good.

Renata (and all other primary care givers, which is most of us),

You can have one little piece of reassurance. The Alzheimer's Association Safe Return program includes a service for caregivers. You can be registered and wear a bracelet identifying you as the caregiver for a memory impaired person. A call to the number given will supply all the relevant for someone to make sure your loved one gets cared for. With or without the Safe Return program, be sure to carry all that pertinent information right with your driver's license.

I apologize if I'm preaching to the choir on this, but just in case, there it is.

Garnet