Funding Anyone?

Alzheimer's funding, alzheimer's disease

Last month I was driving to work in the early hours of the morning and I got angry. I was listening to a story on NPR about how in the 2003 State of the Union address, President George W. Bush committed 15 BILLION dollars to help fight AIDS world wide. I commend him and think that those efforts a decade ago are being felt now in the accomplishments seen in the fight against AIDS. Yes, I understand there are still people dying from AIDS, but the numbers are down. People are able to live productive, relatively healthy lives after a diagnosis. There is now hope, where there once was none. Truth be told, the US has spent more than $50 BILLION worldwide since that speech on the global AIDS fight.

Do you know how much our government has budgeted right now for Alzheimer’s Disease research? $480 MILLION. That is a long way from a billion and certainly an even longer way from $15 BILLION, let alone $50 BILLION.

Just to be clear about how ridiculous the numbers really are: our government spends OVER $140 BILLION a year on Medicare and Medicaid for those with Alzheimer’s Disease. They spend $480 MILLION on research to find a cure so that they won’t have to spend an increasingly astronomical amount on care. Are you getting the picture here?

WHY CAN’T WE COMMIT THE SAME AMOUNT OF MONEY FOR A DISEASE THAT HAS NO CURE, IS GUARANTEED TO BANKRUPT NOT ONLY OUR COUNTRY BUT DOZENS OF OTHER COUNTRIES AND DRAINS FINANCES, EMOTIONS AND FAMILIES FOR YEARS AND DECADES?

It is hard to compare apples to apples. You never want to have your words misunderstood. I am not, in any way saying we shouldn’t support the fight against AIDS or any other disease. If you are someone who is fighting that fight or losing a family member to it, the last thing you want is some blowhard talking about cutting funding and moving it to another worthy cause. I am not asking for any cuts to be made for other disease research.

They are all worthy causes.

alzheimer's disease, funding for research

My mother suffered a heart attack not that long ago. I was scared. I was completely taken by surprise and rushed to be by her side. But after a few days she was home, taking it easy and a year later she is enjoying celebrating 50 years of marriage to my father. I still worry and I still harp on her about taking care of herself, but somehow it is so completely different than watching Jim succumb to the overall evils of Alzheimer’s Disease. She was able to go back to her “normal” life and not lose any mental or physical capacities. There are not financial implications. There are no long term plans needed. She has a warning, she has doctors orders, she has hope.

My father is a prostate and skin cancer survivor many times over. Again, with each diagnosis, surgery and waiting game, I have gone through an array of emotions, which always includes lots of worrying, crying and plain terror. So far, he has remained cancer free, only needing large chunks of skin removed every couple of years. His prostate cancer seems to be in check. Over all, I think that having these scares has made me that much more grateful to still have both of my parents in my life. I am thankful each and every day they are here to help me because they are, at times, my saving grace and my shelter from this storm.

Cancer and heart disease run in my family. Both sides. 3 out of 4 grandparents have succumbed to one form or another of cancer. 3 cousins have been diagnosed, 2 are still with us; Because of advances in treatments which came directly from research. I have lost family members that I loved dearly to cancer. I raised over $4800 while training for and eventually running a half marathon for the Leukemia and Lymphoma Society in San Francisco. I dedicated that run to my cousin Jay, who passed away much too young, at 14, of leukemia.

I have seen the fight and the inability to win. But along the way, I believe the difference is in the ability to have hope. To have the chance to fight. The chance to win. With Alzheimer’s Disease, victims are not given any of those things. You are given a diagnosis and sent home to do research or not. To cry, or not. To tell others, or not. To raise awareness, or not. To see the doctor in 6 months, or not. To make financial plans, or not. To seek spiritual help, or not. There are NO rules, guidelines, or definitive game plans. You are left to your own devices.

I am beyond grateful for the fact that others before me took up other causes that needed research, funding, awareness and cures.  People that lost loved ones. People that were hurt, angry, sad, lost and eventually found by their hard work and dedication to a cause that had taken from them someone that could not be replaced.

Can anyone explain to me why we can’t do the same for Alzheimer’s Disease? Why can’t more people speak up? Why can’t more funds be allocated and disbursed? Is it going to take another Rock Hudson, Elizabeth Taylor and marches in the streets?

The problem arises with the simple fact that Alzheimer’s Disease isn’t contagious (though it can be hereditary).  It affects “old people” (tell that to the thousands of Younger Onset patients). No children are affected (except for the children and grandchildren that are scarred for life by witnessing the Long Goodbye).There doesn’t seem to be a lot of outrage at the lack of answers or cures.

Well, there is outrage with a few of us. I am mad. I am mad that there are people that can speak up and don’t. I am mad that people whisper and try to hide what they are going through. I am mad that frivolous things are funded but more research and programs to help families dealing with this horrible plight are not. I am mad that there are so many of us who have no help or hope or support.

Which would you rather be diagnosed with? Cancer, AIDS, Heart Disease or Alzheimer’s Disease? 3 out of those 4 have treatments and survivors. 1 does not.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (10)

Happy 365 Chances to Make Someone Else Happy

Happy-New-Years-sayings-quotes-1-570x759

Happy New Year. We say these words to each other in merriment. We say them to strangers as a greeting. It is something we wish for one another but how often do we help others actually have a happy new year? All year long?  Do we celebrate together and then toss the sentiments aside once the celebration has worn off? Do we discard our desire for others to be happy along with our annual resolutions? Why is it so difficult to stick to lists of things we want to better about ourselves? It is also sometimes just as difficult to remain a steadfast partner, friend and caregiver.

When the clock was striking 2000, everyone was worried about Y2K…remember? Jim and I brought that significant time passage in together on the island of Martinique. It was a blast. We had a spitball fight with the other dinner guests at our resort (a tradition in France, so we were told) and met and danced and rang in a new century with people from all over the world. We had to fly out the next day and there was lots of chatter about whether or not the planes would be able to take off. They did. We were disappointed. We were more than willing to stay another day in paradise. Later that year I would become pregnant with Frances and our family would grow and become enhanced in ways I could have never imagined. I also couldn’t have imagined at the time that in just a few years I would be mourning Jim every day; while he is still fully alive and completely healthy other than his early stages of Younger Onset Alzheimer’s Disease. I suppose it is a blessing to not have a crystal ball. I look back and can see our youth, our love, our happiness. I cannot fathom feeling, looking or living that way again. All I can see now is Jim’s progression and the decisions and work I have laid out before me. How I long to have the ability to be carefree and full of options and life as we were just years ago.

It will be a new year. But will it be a happy one? We are ultimately all in charge of our own happiness, regardless of what life hands us. Keeping this in mind, I believe the only way I will be able to remain happy is to focus on the kids. Focus on helping others. Focus on making it a “happy all year long” for the many caregivers that are going through this journey. I will remain steadfast in my determination to speak out and educate. I have been blessed this past year with new friends that have stepped up to the plate, old friends that have been a beacon of support and love, much needed assistance from perfect strangers and the love and affection of two children, two parents, a brother and a husband that remind me everyday what matters most. I want to pay it forward. With a little money and a lot of time, I plan on doing this. Just finding that money and that time….

It is hard, very hard, to remain strong day in and day out. It is hard to rely on others for help. It is easy to concentrate on helping others at the same time we ourselves are needing help.

It will be interesting to read these words again in 365 days to see how I feel, where we are and what changes have occurred in our world.

I ask that each of you focus on making 2014 a year to find wonders that surround you, find love from within and to help others make this a happy year, all year long. The benefits you will receive will far outweigh those that you give. And it will make our world a better place.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comment (1)

Patience is Indeed a Virtue.

Christmas 1998

Christmas 1998

Patience.  How I wish to the heavens above I were a more patient person. Unfortunately, all of my life I have struggled with this very thing. I distinctly recall as a young girl my Father talking to me about being patient and  learning to relax. Many years later he is still telling me these same things. It seems such a cruel joke for me, of all people, to be put into a position where each day brings a new level of need that I could never have foreseen. When you are a mother, a full time employee and a care partner to someone with Alzheimer’s Disease, patience seems to always be flittering just out of reach.

I somehow find the patience to deal with work, although there are times I can tell I am not quite as tolerant as I used to be. I have patience to deal with the person who just cut me off while driving. Or the call center person that answers when I call for the 3rd time about a bill that is incorrect. I have patience for the person talking loudly on their cell phone next to me in a restaurant. Somehow I manage to tolerate a rude server or incompetent customer service rep.

Where I seem to be lacking in patience:  a combination of two kids and a husband that sometimes makes me feel like I have a 3rd kid. The people I love the most are the very people that will bring out the utter lack of restraint I possess. By the time I get through my workday, I am sometimes on the cusp of a meltdown. Then to find out one of the kids forgot their homework or that Jim didn’t check to see if Brad had homework and instead stayed at the park way too long so we are now rushing to get something to eat and out the door to practice or piano and homework and reading will have to wait. Homework comes first, right? Or when someone finishes up the bread, milk, bagels, cereal, fruit, etc. during the day and doesn’t mention it to me so I can pick it up on the way home. I find out we are out of something the next morning when it isn’t there to fix for breakfast or to make for lunches.

If I only had to deal with one area of my life that needed patience, maybe that would work.  But it seems that I am constantly needing to use every ounce of tolerance I possess and search within me for any reserves. Sometimes there isn’t any to be found.

Then the guilt comes. Although I am getting better about the guilt, I see it as a gift to keep me in check and to encourage me to be the calm I want to see in the world.  Especially my own world.

Those of you that read my words who have traveled this path will certainly understand and probably relate. Those of you reading my words without a  personal experience living with someone with Alzheimer’s Disease will hopefully become more educated and garner a better  understanding.

In the past two weeks I have: walked in the door to find that Jim has taken ALL of the fire alarms down and laid them out on our bar in an attempt to find the one that was beeping (he even grabbed the one out of the attic); found my treasured “Life Is Good” mug hiding above the dryer with a huge chip missing after Jim had told me weeks ago he had broken it and thrown the pieces in the trash outside; had to reprimand Brad for disrespecting his father and taking advantage of our situation, while Jim was standing there aloofly listening; discovered Jim sleeping with his jacket on in our bed with two quilts and a blanket also covering him; found an overflowing basket of wet clothes sitting outside and Jim not recalling when he took them out there; asked Jim to keep an eye on the heat pump I had just turned on for the winter to make sure the water was flowing through the radiator pipes, upon returning a few hours later from softball practice I realized the heat had not come on, Jim had completely forgotten and the house was freezing. I have witnessed a slight decline in Jim over the past few weeks that starts the heartbreak train and the emotional inner-turmoil churning. Yes, you can know that someone is going to get worse and read all the books and speak to all the specialists. But it cannot prepare you to be a bystander as it unfolds in realtime.

By sharing these stories I am not putting Jim down or trying to have anyone feel sorry for me. I think it is important for everyone to understand that having Alzheimer’s Disease is just that; A DISEASE. There is nothing to be ashamed of. It is more than forgetting who someone is or getting lost. It is a frustrating life that can wear even the strongest person down.

The REAL irony and truly sad part is Jim is probably THE most patient person on this Earth.  If the roles were reversed, I cannot imagine him not being patient and understanding. He always has been, even now. He doesn’t get mad and angry and just accepts what comes as it comes. He continues to teach me so much and is helping me grow into a person that is so much better and stronger than ever before.

The next time you see someone in the store, or driving down the road or in a restaurant and they snap for something that doesn’t seem like that big a deal, please stop and remember you don’t know the fifty things that happened before that moment they had dealt with. One minor thing can release the flood gates that have been held together by a wall of crumbling rocks.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (11)

Are you With Me?

In Las Vegas, 1998

In Las Vegas, 1998

When I was much, much younger, I wanted a Nissan Maxima. The style of the early 80’s car appealed to me. Into my late teens -early 20’s, I wanted a white Jeep. Then, I moved to Las Vegas and got caught up in glitz and glamour and wanted a Mercedes E Class. After a visit to Glacier and Yellowstone National Parks, I was fond of Subaru Outback’s.

I never owned any of those vehicles, Money or practicality overrode any desires. But even without owning one, I grew tired of that particular model and moved onto another. Always wanting something else. I now drive a mini van. I don’t really like saying that. I don’t like thinking that I am a Van Mom. But I am and I have learned to own up to the inevitable. I have 2 kids. They play sports. Therefore, we need something that has enough room for a cooler, two bat bags, luggage and other stuff that always seems to be piled into the back of the van, including additional kids.

I no longer look longingly at a Mercedes or a Jeep or any other vehicle. I have become satisfied with what I have. I am not even sure I would buy a different car should I win the lottery.

I am typically not a complacent person. Just the opposite. Always wanting to learn something new, meet new people, see new places and always wanting to move on the next best thing.  Since I have been dealing with Alzheimer’s Disease, a situation  that I have NO control over, I am slowly, slowly learning to accept life. Accept what we have. Accept what others can give. Accept what we don’t have. Accept our fate. Boy, that last one is really hard when your natural inclination is to push back hard enough to defy fate.

When I met Jim, I stopped looking for anyone else. I knew when I met him, he was it. Over the years, I became a bit complacent and accepted our life. He was the man of the house, I was his wife with lots of opinions and most of the time we agreed on the order of things. It was just easy to travel along at status quo.

When my Mom and I went to try on wedding dresses, we browsed through the showroom and must have had 15 dresses hanging around the dressing room. I tried on the first one and said, “This is it.” Both my Mom and the saleswoman kept encouraging me to try on the others. “No need. That would be a waste of time. This is the dress.” I was sure and I have never regretted my decision.

Sometimes in life, you just know something. You know when you walk into a certain home that is for sale that this is your home.

You know when you hold your children for the first time that you will love them unconditionally forever.

You know when you find a calling or a friend or a career.  I have finally found my calling. Have you?

“First they came for the communists, and I did not speak out—
because I was not a communist;

Then they came for the socialists, and I did not speak out—
because I was not a socialist;

Then they came for the trade unionists, and I did not speak out—
because I was not a trade unionist;

Then they came for the Jews, and I did not speak out—
because I was not a Jew;

Then they came for me—
and there was no one left to speak out for me.”

Martin Niemöller

This poem was printed years ago in Dear Abby. My parents cut it out of the paper and posted it on our refrigerator. I always loved the meaning behind the words. I always aspired to live up to those words. I am not sure I have had the chance in the past. Maybe I did and let the opportunity drift by without noticing what I could do. I now feel like I would not be living up to the fire and wisdom Mr. Niemöller spoke of if I don’t tell our story. If I don’t try to help others in our same situation, will I be able to look myself in the mirror years from now? If I focus just on my personal loss and our family and don’t try to help others understand, am I  doing my part to end an epidemic that is at hand? I have a voice. YOU have a voice.

I read memoirs sometimes that relate childhood experiences. Which makes me consider how my own children would write their story one day should they choose to. What would they say about their Mom? Their childhood? Their Dad?  I don’t live my life by this thought, but every once in a while I ponder the questions. When I do, I realize that I hope they would be able to look back and know their Mom loved them above all else. I hope they know that their Dad was a smart, funny, sincere man. I hope they recall days of happiness and years of contentment. I hope they realize the sacrifices and the heartache that their parents went through on their behalf. Finally, I hope they can write a story of triumph and not of tragedy.  My dream would be for them to feel as if their Mom helped others and helped bring about a cure and a change.

There is something to be said about being content, but there is also something to be said about ambition, drive and searching for more in life. Is it a sign that I don’t have the drive and spirit in me anymore because I no longer look longingly at a vehicle?

It is time to push myself even harder and further; many people are depending on me. I am depending on me. My kids are depending on me.  Lovers and parents and siblings and children are depending on me. I am ready. Who is with me?

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (6)

D.C. Success

Frances and Brad at the Capitol, July 2013.

Frances and Brad at the Capitol, July 2013.

Wow! What a crazy, hectic week. Work, a trip to DC, a kick-off for our local Walk to End Alzheimer’s and more work. It has been busy, but also a very rewarding and encouraging week. One of those weeks you need  to make up for the weeks that push your limits beyond where you think you can go.

On Wednesday, Brad,Frances and I drove up to Washington D.C. so Frances could hand deliver a letter she has written. I am posting this letter for you  to read on Sunday night. It is a letter that I think shows what an amazing, mature and strong young woman she is turning into. I warn you now, it is probably more touching than anything I have written. But I digress. Back to Wednesday.

Our first scheduled appointment was with Representative Scott Rigell for 10:45 a.m. On a good day the drive is 3 hours. With morning traffic, you can count on an extra hour. Plus trying to find a parking spot and then walking to the building. So, we left at a very early 6 a.m. Have I mentioned to you how much of a morning person I am not?

Luckily, there were 3 of us in the van and I took full advantage of the HOV lanes. We arrived on time, with a slight hiccup. IT WAS HOT. I mean, HOT and HUMID. Walking from our car to the first meeting took about 20 minutes. In that amount of time, I sweated. A lot. I quickly went into the bathroom to blot the sweat off my face, only to realize that my makeup had melted and I now had sweat rings under my arms. Are you kidding me?  I mentally made a note to forgo any kind of arm lifts in the immediate future.

We walk into Rep. Rigell’s office and there are 3 people in suits waiting ahead of us. Another mental note: we have 30 minutes to meet and greet and get back over for our

Rep. Rigell, Karen, Frances and Brad. July 2013.

Rep. Rigell, Karen, Frances and Brad. July 2013.

next meeting. As I sit in the waiting room trying to figure out what we are going to do if we are late, in the Congressman walks. He apologizes to the others waiting and asks them to reschedule for later in the day. Then, we are ushered into his office for a quick, but gratifying picture opportunity. He sits Frances and then Bradley behind his desk. Frances tells me later that his chair was really comfy. He signs an autograph for Bradley. I ask him why he hasn’t co-sponsored the Hope for Alzheimer’s Act. He apologizes and tells me he is going to, he just hasn’t yet. He tells me that he will do whatever he can for us and that this is very important to him. I believe him.

Rep. Rigell and Brad, July 2013.

Rep. Rigell and Brad, July 2013.

 

Since then I have received an e-mail from his office with the promise to co-sponsor the Hope for Alzheimer’s Act. It is in process…. YES! One down, one to go.

We finish our call and we have 15 minutes to walk from one side of the Capitol to the other for our next meeting with Senator Mark Warner. And it is now even warmer than it was 30 minutes prior. More sweat and now my hair is sticking to my neck and I think my feet have increased in size along with my fingers. Great.  Thankfully the kids are with me and you know, kids have a way of helping you put things into perspective. Bradley tells me that “they don’t care what you look like Mom.” and Frances tells me “you look fine.” Coming from a 9 and 12 year old, I quickly feel better knowing they usually tell me how it is. (Plus at this point I am a little desperate.)

Frances and Brad riding the underground trolley at the Capitol, July 2013.

Frances and Brad riding the underground trolley at the Capitol, July 2013.

We arrive at Senator Warner’s office with 1 minute to spare. When we arrive, the receptionist asks me if I received the e-mail asking to move our meeting from 11:15 to 1:15. No, I hadn’t. Must have gone to my spam folder. In my mind I am already trying to decide how we can avoid spending the next 2 hours in the 150 degree heat outside. In walks Luke Albee, Senator Warner’s Chief of Staff. He immediately alleviates my concerns as he asks an intern to give us a tour of the Capitol. Then we will meet him for lunch and then we will meet with the Senator. And, oh, by the way, we don’t have to go back outside because there is a trolley from their building to the Capitol. I want to hug him, but I can’t raise my arms…..

Sen. Warner, Karen, Frances and Brad. July 2013.

Sen. Warner, Karen, Frances and Brad. July 2013.

We have a wonderful tour followed by a wonderful lunch. Miraculously my two, beautiful children acted beautifully. All of the teachings of all the manners seemed to come together during our tour, our lunch and our visits. There are small miracles sometimes… Then we are back to the office for our 3 minutes with Senator Warner. Maybe 3 and a half. But that is all we needed. Frances gave him her letter, answered  his question of what it says and we get some pictures.As I put my hand on his back to pose for a photo, I feel dampness. I bet if he took off his jacket he would have sweat rings too! Guess even the powerful have to deal with the same heat us little people deal with. Then we are being ushered out of his office. His next appointment is ready. I am panicking inside of my head (again). Wait. We haven’t gotten an answer from him. We haven’t really asked him to co-sponsor the Hope for Alzheimer’s Act. So I shake his hand, thank him for his time and quickly plug the real reason we have driven all this way. Again, my children are miracle workers. Senator Warner agrees to co-sponsor the Act. YES!!! SCORE! And our trip is a success. Two for two.

The next day I receive a call from Mr. Albee, following up and re-iterating that the Senator will be co-sponsoring the Act. I tell him “Thank you. I feel like I have done something good.” “It wasn’t you, it was your kids.” And Bam. I am back down to earth.

Doesn’t matter.  All that matters is the end result and we have gotten a very small victory in one battle of a huge, huge war. But, you have to win the battles in order to win the war.  And so I take a breather and prepare for the next round of battles.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Younger Onset Alzheimer's Disease and have Comments (3)

Love my Hood

 

Thank you Tara M. Farrell Photography for this wonderful collections of photos from our neighborhood.

Thank you Tara Farrell Photography for this wonderful collection of photos from our neighborhood.

 

I love my neighborhood.  I mean, I FREAKIN’ love my neighborhood.  We have sidewalks, a tree lined Main Street that comes with a 4th of July parade, cottage style homes built circa 1918, Easter Egg Hunts in a Ravine, Halloween nights than include over 300 kids stopping by  and good neighbors. Our kids walked to pre-school and elementary school, we can ride bikes to the library and a yummy cupcake store. The elementary school is located on a historic river that has beautiful sunsets, a fishing pier and a playground.  I can walk to one of my favorite restaurants of all time, which comes in handy after a few drinks. We have a

Our neighborhood pier in the winter.

Our neighborhood pier in the winter.

neighborhood women’s group that meets once a month, a book club and garden club (ok, I don’t really participate in the book and garden clubs, but it’s nice knowing they are there). We have acquaintances and friends.  Good friends. I have the type of friends that when I disappear for weeks on end or don’t show up for a party or two and don’t return calls, they will come knock on my door and want to know what is going on.  They care.  I know they do and they show me.  I can walk or ride my bike to their homes and my kids can do the same.  It isn’t uncommon to come home to a note, flower or some small gift left on my front porch. When I have one too many and I get sappy and sad and start to feel sorry for myself, they let me. And then they are still my friend the next day and tell me it is ok, I am allowed.  I wouldn’t have been able to start this blog or continue with this blog without the support and help I have received from them. I am not sure I can really put into words the pulse, love and sustenance that comes from being part of this community. We have lived here ten years and although I sometimes complain about the small yard or small house, old windows, old bathroom and work that constantly needs to be done, I absolutely love my neighborhood. But the problem is…..

When someone has Alzheimer’s Disease, they no longer see things that have to be fixed or quite understand how to fix them.  Remember when I said the neighborhood is circa 1918?  With an almost 100 year old house come LOTS of little things that constantly need to be done.  Some are simple. Some take more time and brain power and some take lots of money.  Jim worked with electronics in the Air Force, so in the past, he was able to do those little things around the house.  He was able to multi-task. Changing outlets, putting up ceiling fans, painting, putting up wood trim, caulking around the tub….all the things that home ownership requires were easy.  Now I feel like the house is falling apart around us.  I’m not allowed to get frustrated with Jim for not being able to do it anymore. I sure as Hell can’t do most of it myself and I don’t have the funds to pay someone every time a little something needs to be done.  Coming home to chipped paint, old outlets, and weeds upon weeds is driving me crazy.  Well, one of the things driving me crazy.

Frances heading to the Fourth of July parade, 2007

Frances heading to the Fourth of July parade, 2007

Jim has been out of work for over a year.  I made the terrible mistake of realizing he has been out of work for over a year and hasn’t gotten one single project done around the house.  NOT ONE.  First of all, I need to stop thinking like this, it isn’t productive and it doesn’t do any good.  Second of all, not one project in over a year.

Ok, I’ve made my point.  So, while I am wondering how to remedy this, I am forced to recall something I heard at one of my first Alzheimer’s Support Groups:  Don’t focus on what he can no longer do, focus on what he is still able to do. He still makes the kids’ lunches and walks our son to school.  He still does dishes and helps with the laundry and vacuuming and cleaning the bathrooms and mowing the grass and going grocery shopping (that will be a whole other story).  He is still doing.  Breathe Karen.  He is still here. In the now, love his abilities now and put the things he used to be able to do in the memory bank.  Realize that person is gone and the person you have in front of you now is doing the best he can for as long as he can.

Brad searching for Easter eggs, 2009.

Brad searching for Easter eggs, 2009.

Each day I must repeat these steps.  As the man I have known for over 17 years slowly slips away from me, I am forced to change my ideas of the perfect life and what is acceptable and what isn’t.  I have to let go of wanting my home to look like a Southern Living Magazine. Or at this point a home that doesn’t need a million things done to make it as nice as everyone else’s .  There, I said it out loud.  I still compare parts of my life to others and let’s face it;  My life isn’t like ANYONE else’s that I know and won’t be for a very long time. I need to accept the love that fills my home and realize that is what is really important. Thankfully the neighbors and friends I just spoke of don’t keep tabs on the work that needs to be done or the fact I no longer invite them over for dinners or gatherings.

Besides, isn’t it every woman’s dream to have a spouse that does the dishes, bathrooms and vacuuming? Even if it takes him 3 times longer than it used to?  Even if I catch him using the dish detergent to clean the bathtub? As a good friend pointed out, “It made the bathroom smell so much better than Lysol.” So there! I have friends that can keep me in the now and  I have every woman’s dream man. And he is mine, all mine baby!

 

 

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (9)