Many of you have written and shared your stories. I have cried reading the heartbreak and the sadness that bestows so many of us. I am so glad you write to share your stories so I know I am not alone. I know my words help you. I know that sharing my story is making a difference.
I also want to make a difference for those that have no clue what it is like to live with someone with Alzheimer’s Disease or any form of dementia.
I am often asked, “Where is Jim in the progression of the disease?” That is just as tricky to answer as the question of when was he diagnosed.
A couple of days ago we met with Representative Scott Rigell. It was a very good meeting. He gave us a full 30 minutes. He listened. I talked. He talked. Jim sat and agreed when he should and nodded when he should. I know this is so hard on him, but he doesn’t complain and he doesn’t mope around feeling sorry for himself.
As you can imagine, getting ready to meet with our representative entailed picking out a shirt and tie for Jim.
About 6 months ago, we attended a funeral for our mailman. Jim had trouble with his tie, but he eventually tied it and wore it to the funeral.
Three days ago I put his tie around my neck, tied the knot, and handed it back to wear for our very important meeting with Congressman Rigell. As I was passing the tie over itself, I was twisting inside to match the twisting of the silky fabric. All the while trying not to show it to Jim or the kids. It took me a couple of times and I was trying so hard to concentrate on the task at hand and not the fact that my husband can no longer do a tie by himself.
As I mentioned in a recent post, there were places he had missed shaving, claiming that if he shaved any closer he would cut himself.
Sometimes I confide in acquaintances and friends of the little things Jim does that are driving me crazy and that “aren’t right”.
When I tell them something like, “Jim couldn’t tie his tie today.” And then they reply,”Oh, well Stan (their husband) doesn’t do that either.”
Really? Your husband doesn’t know not to put cans of tuna in the refrigerator? Your husband doesn’t know to put the paper in the recycling bin? Your husband doesn’t know how to tell if the dishes in the dishwasher or clean or not?
The thing is, I know when they say these things to me they are trying to make me feel better. Like, “it’s ok. My husband is a complete goofball too.”
But it doesn’t make me feel better. It makes me feel like my concerns and my complaints aren’t valid. I KNOW my husband. I KNOW what he was capable of doing. He could tie a tie blindfolded. He could multi task. He could remember a schedule and not get lost driving to and from a place he had been 5 times already. Do not tell me that your husband can’t remember to take out the garbage either. Guess what? My husband could. And that is why I married him. Jim was an amazing man that made me a better woman. I am not complaining about him as a husband or as a person. I am lamenting the loss of the person that COULD do those things and did those things. That is why I am upset. So what if he can’t speak French or play the piano. Guess what? He never could. But he did know how to paint the house and he did know how to organize a home and knew how to switch out an electrical socket. Please stop invalidating my loss by telling me your husband doesn’t do those things either. Your husband never does because he either can’t or won’t. My husband doesn’t do these things because he can’t anymore. It is a symptom of where he is in the progression of this horrific disease and each time I recognize that he isn’t able to be his old self, it shows the continuous movement of the disease forward on his mind.
I am sorry that your husband doesn’t do the dishes or help with laundry. I married a man that did. I hate the disease that is keeping my husband from being able to do those things still.
I share his decline not to put him down or show him in a bad light. I do this to help others. To educate. It is time we all stop whispering about what it is REALLY like. There is no shame in not being able to remember a conversation you had 5 minutes ago. The shame lies with those that try to pretend that nothing is wrong. When you do that, change doesn’t come and nothing gets done to help those that will travel this road in the days, months and years ahead.
Speak up. Share your stories. Contact your elected officials and tell them they need to support more research funding. If you don’t, NOTHING will be done.
People used to whisper when they spoke of cancer because there wasn’t a cure. Now they slap a bumper sticker on their car proudly acknowledging they are a supporter or a survivor. We need to do the same for Alzheimer’s Disease and other dementias. Until we do, there will still be whispering and embarrassments and cover-ups.
Speak up and speak out. There are too many of us that share this feeling and this long, long path of HELL for nothing to be changing or to be done. We need more funding for research. We need to end the stigma. We need to change the view of memory loss and make it something that the average person cares about, just like they do AIDS/HIV, Heart Disease and Diabetes.
Do not misunderstand me. I am VERY appreciative of the fact we have provided money for cancer research and heart disease research. That has saved the lives of people I care deeply about. But the amount spent on other killers is not proportionate to the amount spent on Alzheimer’s Disease. I just don’t understand why. And I don’t understand why more people aren’t doing something about it.
It is time my friends. The time is NOW.