by anonymous (January 2003)

Our conversation the other night really got me thinking about the whole reality vs honesty issue and I took it to my LBD caregivers group on line. Here are excerpts from the emails that might help you understand what's going on with Dad and I. This is pretty lengthy, so you might want to print it out and read it somewhere comfortable. The first one is mine:

I know we've touched on this subject before, but it keeps coming up for me. Don is so much better when people are around that I feel that nobody else knows what my reality is (except you all of course). Feeling that I'm not believed, whether or not this is the case, is isolating. I find myself either downplaying the problems or emphasizing them, depending on my current need, and neither approach adds to my credibility.

The problem is greatest with our children. I tell them what's happening and they come for a visit expecting to find things going badly. Instead Don responds to them by being very "on" and I feel like an unreasonable and unrealistic complainer.

Yesterday Don was really out of it. Couldn't put two coherent thoughts together. Couldn't answer simple questions or follow simple directions. Left tools around (no, not power tools... they're locked away), tried to do chores he hasn't been able to do in ages, forgot how to use the phone, etc. etc. etc. Actually he's been this way off and on for days now.

Then we went to our faith-sharing group at 7:00 PM...his bedtime for the last week...and he was alert, articulate and even profound! I'm sitting there looking like the most stressed out loser in the world and for what? Why? My husband clearly doesn't have any problems! And when I'm asked in front of him what's wrong with me I can't really say,"Well he may look good now, but you should have seen him an hour ago....or this morning...or yesterday...or ANY TIME BUT NOW!" And saying it behind his back would feel like a kind of betrayal.

Help! How do you all cope with this?

• Mama did that every time we went to the Doctor, and every time someone would come to the house...I always felt like everyone thought I was stretching the things that she did, I just knew they thought I was lying. But, it got to where she couldn't control it anymore. It is a terrible disease, and I wonder if it doesn't take a worse toll on the caregivers.
• Oh Eileen I was there too yesterday, Bill had a doctor appt and the night before he had me look at the bug bites on his stomach. I said it looked like freckles to me. Before the dr appt I asked if there was anything special he wanted to talk about and he said the bug bites. We get to the appt and Bill is being real clear and articulate with his answers and I mention that he wants the dr to check the bites. Bill pulls up his shirt and says "it looks like freckles"! When we get out to the nurses station and are waiting for some paperwork Bill looked down at his shoes and said I should have had him check out the electrical wires in these shoes, they are starting to burn me.
• Are they putting on for us or do they just feel better to have company. I think they feel comfortable with us, so they can be just themselves. It's a tremendous strain to pull yourself together when ill. Just because they can make the effort for a short time, does not mean they are faking. I believe that is why there is something of a collapse afterward.
• Joe was very bad when we went in April - so much so that the doctor could hardly do anything with him. In July he was superb - walking, chatting doing everything perfect, even on the Mini Mental test.
• I feel I can not even come close to describing the life I have living with LBD to anyone outside this group. Words are meaningless to someone who hasn't seen one of these LBD sufferers in action. Visitors see a pinpoint in time and visitors seldom come.
• I find this extremely frustrating, and catch myself at times wondering if I'm being overly dramatic in explaining my life to my children, my friends, Jack's children, and his friends. It felt so good to have my daughter tell me this summer... after spending 2 hours with Jack alone... that I had a toddler on my hands! She saw very little difference between the amount of energy required looking after her 18 mo. old and Jack. My USUAL experience is to have Jack's children or his friends announce "Oh, he is doing so GREAT!" I feel not believed, isolated and angry. I amuse myself with secretly plotting revenge... I entertain fantasies of leaving Jack alone with these people and DISAPPEARING for a day or so... always brings a smile back to my face...
• I keep telling my children like it is at the time... but I emphasize how very much it changes from one hour or one day to the next. They have been visiting when he is good, bad, better etc. over the years so they now have the full picture. Maybe it is because you are in the beginning of it all at present.
• I am hoping that Bill is really on when we get together with the kids at Christmas, but on the other hand one of the boys already told his sister that nothing is wrong with his dad. We not only have a balancing act with the medicine but now we have to hope that our children will be able to enjoy their father/mother when they are around but we need to make them realize that there is a problem that they are not seeing (or don't want to see) and that it is not going to go away. Our daughter wanted to come up when things got so bad but when Bill got better I told her not to. Now I am thinking maybe I should have her come visit us, then she can tell the boys what she sees going on with their dad and it won't just be me.
• Not being believed is an every day occurrence... but then when you are out of the early stage, you wish you could have those times when your husband appeared normal BACK!"

It's me again, Jeff. The responses are still coming in, but this seems to be everyone's most difficult emotional challenge. See why I sound like I do? Thanks so much for listening, even if you do have to take what I say with a grain of salt.