Why did you say that?

Scooterr

     About a month ago my wife and I were out at an local event. While we were there a gentleman approached us and introduced himself. As he shook my hand  I introduced myself. He then went to shake  DW hand. DW just stood there looking at him not saying a word (DW for the most part is non-verbal). So I intervened by saying, "this S_ _ she's my wife and has Alzheimer's." I small talked the gentleman, and he walked away. After his departure my wife looked at me and in her way of communicating said, "why did you say that?" I knew exactly what she meant. Why did I tell some stranger she has Alzheimer's. I told DW, "I had to say something and it just came out that way I'm sorry if it embarrassed you, and it won't happen again." She stated, it's ok." Was this just an easy out for me? At the time I couldn't understand, I was totally baffled in why I said what I did.

   Now for the last month I've been really thinking about why I said what I did. I look back on DW and my journey of life, and it's made up of events, people, places, family, hard times, good times, many other things, but now AD is added. In fact AD has  basically taken most of our life, as many of you  know, you live it everyday 24/7. I believe deep down it controls so much of my life when I introduced my wife, I wanted to put a face with disease. I want people to see what AD looks like. 

   I know many people have heard about AD and other dementia, but that's as far as it goes. My wife spent her whole life  inside the education field, she was a vicious advocate for education. I look back on her life with amazement at everything she has accomplished. Now with AD she's not done I refuse to let her life end this way. I know deep down she still has the desire to educated and I know she wants people to learn from her.  I'm sick and tired of sitting on my hands behind these walls of our house not doing nothing, but watching this disease take her this way, she deserves better. Her disease will not be in vain! 

   My wife has put a face with Dementia to one stranger, did it resonate? I don't know. I made a strong promise to my wife, "baby with your face and with me as your sounding board we will meet people who you will educate, they will learn."

  I know there's people out there who don't want to hear this, and sure  don't want to see it.  That's ok, but I know there's people who will listen and want to be educated. Like I said, "I'm sick and tried of doing nothing." They need to know about Dementia, they need faces to remember, they need to know what a day and a life is being a caregiver. This all can't be for nothing.

 (DW new journey beings Wednesday where we will meet with some community leaders it's time to get busy.)

loveskitties

Recently there have been many ads on the tv channels I watch about dementia and AD.  While they are mostly requesting donations, I hope that it will bring greater awareness about this awful disease.

Good for you, it reaching out to others to help educate them.

If it hurts your DW for you to tell someone you meet about her illness, perhaps you could make up business type cards to hand them...not only to let them know her situation, but to also pass on info as to where to find out more about the disease's impact not only on the patient but also the caregiver(s).

Best wishes for a good meeting with your community leaders.

Paris20

My husband was a college professor. He could also fix anything. Now he is in assisted living, skilled nursing care. He lives a double whammy of Alzheimer’s and stroke. Before the stroke, we had several people come to the house to fix things that in the past my husband would have handled easily. I know he resented it. Several times he’d follow the different repair people around, trying to tell them what to do. He often sounded foolish. Once I was able to get my husband into a different room, I told the contractors that my husband has AD. I said this to explain why DH was acting peculiarly. I felt that I was protecting his dignity by offering an explanation for his bizarre behavior. Each person I spoke to was sympathetic. Some had close relatives who had the disease.

sandwichone123

I think it's important to tell people, but like you it's hard for me to know when/where.

I do tell people who work on or at the house, because I want them to understand why they should take instruction only from me, and also understand what's going on if he does try to talk to them.

Today dh and I went out to lunch. I could tell the waitress thought I was a little controlling, but dh was also looking to me for answers (do I want lemon in my water?). So I took out my Alzheimer's Association "Please be Patient" card and unobtrusively put it on the edge of the table. The next time she was by, she looked at it, also unobtrusively, and smiled. She got it.

Once I gave it to a waitress who was boggled by the card and took it back to the kitchen, presumably to discuss with someone. She returned much relieved and with much thanks.I hope in some small way I am improving the experience not only of the future customers of these waitresses, but also of their own families and friends, and their contacts in future careers.

ImMaggieMae

Scooterr, you did the right thing. I think few people realize what Alzheimers is like unless they live with someone or have a close relative with the disease. I always thought that PWD just slowly lost their memory and sat quietly around at home or in an nursing home. I had no idea of the behavioral issues or hallucinations and delusions and the constant care to do simple daily things we all take for granted. Even when my DH was diagnosed with MCI and I was in denial, thinking it was just some memory loss due to aging and possibly from chemo drugs 12+ years prior. I had no idea until repetitive behaviors began a little less than  a year ago. His primary care doctor was of little help and it took 7 months to get an appointment with a neurologist. Thank goodness for this forum.

I do tell people who work on things in the house because they need to understand. My husband realized long before diagnosis that he was having memory problems and told our friends who, like me, told him that we all have trouble remembering some things as we get older. I guess my denial was easier because it moved slowly and he still went out walking in the mornings and read the paper every day. And with Covid, we weren’t really going out much other than grocery shopping. Denial was easy until it wasn’t.

toolbeltexpert

Scooterr I am in awe of the your stance that your taking. I pray for the spirit of boldness and pray that the Lord would bless the abilities you don't know you have. I for one will be looking for how it goes. You both will make a profound impact where your at and beyond. I have no doubt.