The Time is NOW!

 

Jim and Brad in 2006. This was before we knew we would be traveling this road.

Jim and Brad in 2006. This was before we knew we would be traveling this road.

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.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (12)

12 Responses to “The Time is NOW!”

  1. Susan says:

    I am so enjoying reading your blog because it make ms know that I am not alone. My father is living with my husband and I and has Alzheimers/Dementia. He was a banker All of his life and now cannot do any bills, forgets to eat unless I make it for him and cannot form sentences anymore. This.Is.Hard!

  2. diana hull says:

    I love reading your blots because you are so right. If you don’t live with Alzheimer’s you don’t know what its like. I watched my husband that was a hunter, fisherman and afraid of nothing be afraid of everything and hide in a room. I had to cover everything that he could see his reflections in because he got very upset. Thank you for all you do. You keep fighting and so will I for a cure of this terrible diease.
    .

  3. Deb says:

    Oh my, you are soooo very right. Unless you have lived this life you have absolutely NO idea. I share your pain & totally understand how you feel. It is so very frustrating! Mental pain, (dementia) in my opinion, is far worse than physical pain. I don’t mean to downplay any type of illness but after watching & taking care of my mom through this it has to be the worst pain of all. Losing your mind AND knowing it is horrible….

  4. Joanne says:

    Yes! Yes! Yes! Speak up, speak out, AND take your loved ones with you! We need to get them out of the house and keep their lives interesting. We need to let them be their beautiful selves and say out loud “they have dementia” or “they have Alzheimer’s” whenever and wherever possible and appropriate if we want to remove the stigma raise awareness. Let’s talk about this!

    I also think the words dementia or Alzheimer’s are almost euphemisms at this point. I mean, doesn’t everybody get dementia at some point? And isn’t Alzheimer’s part of aging? NO. It’s a disease of the brain. My loved ones brain is slowly being suffocated and ever so slowly they’ll stop having the ability to remember things and say things and do things like tie a tie, make coffee, drive, read, use the bathroom, etc,etc,etc. Call it what you will, but it’s a slow brain death that will eventually kill them.

    We need to stop hiding with our loved ones and we need to start being honest about this disease. Thank you for your honesty Karen, and for being brave enough to post this.

  5. Michelle Fox says:

    The first step in advocacy for our loved ones with Dementia, is to accept it ourselves and to not think of them as anything else but normal human beings with an illness. How can you expect others to accept them if you are constantly berating them for what they can no longer do because of their illness. This is not the way to advocate. Be proud of your loved one. They did not ask for this life anymore than we did. If you do not accept their illness and are constantly battling your demons, nothing will get done. If you look back and study Susan B. Komen, they dealt with a lot of loss but they approached the disease vigorously with determination to end the madness of the disease and have made huge strides. Unite and conquer is the only way. Nobody said this would be easy, I cry most days but never allow my mother to see anything but happiness and acceptance. I am not a saint, it is difficult, but the other way of pointing out a fault or a mistake is futile, their brains do not work normally anymore…you are really harming the beautiful memories you have with your loved one. Please, please don’t just live this disease, learn how to handle it. God Bless us all, I know everyone is trying their very best.

  6. Dottie Palmer says:

    I’ve been following your blog once in awhile, I understand what you are going thru, We are just about at the end of our journey, It has been very painful and sad that the man who has been my soul mate is slipping away. Just wish there was more money for research and a cure for this dreadful disease. God has a plan for all of us we just don’t know what it is yet.

  7. Lee Ann says:

    I think one of the difficulties is that just as soon as you begin to accept certain problems, it changes again. Its like its one step forward and two steps backward all the time. We get used to someone being unable to tie their shoes, then all of a sudden they don’t know how to put on their pants. So you are continually hit with reality of changes, over and over. And, no, it never gets better. All you can change is your response. And that’s darn hard to do because you are continually being hit with it over and over. When you can get to some semblance of acceptance of the whole mess, maybe these little steps backward won’t hurt so much.

    I remember when my Mom had just died in 2003, I was driving to Walmart to buy some black shoes for the funeral. And traffic was just as normal as always, and somebody cut me off in traffic. “How dare they? Don’t they know what I’m going through?” I took that being cut off very personally, tears, anger, etc. until I realized that no, that person doesn’t know my world had ended. To them, its just an average regular day. Everybody at some time in their life has a cross to bear. Alzheimers in someone you love is close to the top of the list of crosses to bear. But everyone has some cross to bear in their life. And I guess the sign of maturity is realizing that life is going to change whether you want it to or not. Just hang on and get through the bad spots, enjoy what you can on the good times, and realize that you will be just fine. A little worse for wear, but you will be okay.

  8. Marsha Carpenter says:

    Oh the surprises that every day brings! I remember when my husband told me he didn’t know how to pump gas – I thought he was kidding, he wasn’t. Then one day a tire was low and no, he did not know how to put air in the tire – unfortunately neither did I..how to turn off the oven, turn on the dryer, which is the toaster oven, which is the microwave – then one night attempting to brush his teeth with shaving cream. I only make him shave when someone is visiting or we are going out – he has ruined the second electric razor “fixing it” and I am so afraid I will cut him – but I’m getting better at that. His tie – yes – for 35 years he wore a tie to work but he could not do it…something I never learned. Thank God for brother in laws – now I just leave a few tied and pop them over his head. One day I found a box of cake mix in the ‘frig, he often leaves the bathroom water running (the hot!) and “wash your hands” is something I say twenty times a day. Last week his sister from Baltimore visited for four days…he does not remember, but she does and so do I.
    And yes, the time is now. Those of us who live with this on a daily basis are the only ones who can speak out for those who don’t remember what month or day it is..any idea’s are welcome. If you are the sole caregiver you can’t leave the house but you can write letters and burn up the phone lines.
    Again, I think of you every day. We are old but this is so much for someone so young. Peace.

  9. Shirley Sehar says:

    Today was rough because Wayne got lost in Target. A cashier stopped and helped him! And called me over the intercom to come get him! New horrible step in this HORRIBLE disease! Praying for answers!

  10. laura says:

    Hi my name is Laura and first i was told it was neuro cognitive impairment then i was told it was a chemical inbalance everyday i wonder what will happen to me some days i forget how to make coffee our where to put a stamp, and my first time i did not recognize a person it scares me but somedays are good so keep the faith maybe someone will have a answere thank you for doing this

  11. Penney says:

    I just found your blog and started reading from the beginning. I started reading it yesterday and I can’t stop. Your story is my story with one very major exception – we don’t have young children. This particular post hit home and I am compelled to comment. My husband – a retired naval officer, perfectionist, highly intelligent holder of a top secret security clearance, etc., etc, was diagnosed in 2009 after two years of testing at the age of 51. He could do it all and did. This post put into words exacting how I feel about those “my husband can’t do it either” comments. Thank you! Now, I’ll keep reading.

  12. SABRINA says:

    I am now beyond 10 years. It is unmitigated suffering and madness. It would hep if our neighbors weren’t so cruel. They laugh at my frustrations and talk to my husband to confuse him further. I get no help or support. I am in this situation all alone. A neighbor told me to stop yelling at my husband so I am now the subject of the gossips and am so frustrated. Help!!

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