Archive for December, 2013

Happy 365 Chances to Make Someone Else Happy

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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)

Merry Christmas Story Telling

 

You-Are-Not-Alone-In-This-Motivational-Love-QuotesI want to wish each and every person a very Merry Christmas. When I started this blog back in February, I had no clue of the reach I would have around the world. I have been amazed at the response and I have been humbled by the support and words of encouragement. I am inspired daily to keep going and to do more. Sometimes I am not sure I can. Other times I don’t think there is anything that can stop me. As I sit looking at all I have to do in order to be ready for Christmas morning, I would be remiss if I didn’t write a special post to let all of you know how much your love and kindness have meant to me. I get many notes and messages telling me how grateful many readers are that I share our story. But our story is really the story of  many. In the process, stories are shared with me. I cry. I laugh. I get inspired. I would like to take this special time of the year to share some of the very touching e-mails that have been sent to me. My hope in sharing these heart wrenching tales is to help you not feel alone and to help educate those not familiar with the long goodbye process of Alzheimer’s Disease. I am sorry I am not able to share ALL of the notes I have gotten, but since there are well over 200, I will save some for later and  keep this a reasonable length. I thought Christmas would be a wonderful time to share these stories with EVERYONE. For me, the best Christmas present would be a cure for Alzheimer’s Disease. Since that doesn’t seem likely between now and tomorrow, I will settle for lots of help and support getting a cure to come about in the next year. (I am ambitious) Or at least help spreading the word and contacting those that can make a difference; Your Congressmen and women. Please let them know how important it is to keep funding for Alzheimer’s Disease Research in the budget. Let them know you are watching and passionate about this. There is no other way we are going to see this happen. Please help with my Christmas Wish by contacting them. Please visit this page for links and information on contacting your representative. There are no excuses not to do this.

In the meantime, please read some (I will continue to share over the coming months) enlightening and heartbreaking stories:

You have written about my thoughts, concerns, breakdowns, anger, and hope……lessness. My husband was an airline pilot.  Smart.  Funny. After a year of tests, he was finally diagnosed at 55.  I had two children at home, the youngest was 12.  I know you know my story… you wrote about it. We, too, became involved.  Peter (my husband) was chosen to be a member of the National Alzheimer’s Association Advisory Board.  We gave speeches.  We too, walked on Washington and spoke to our Congressmen.  We were featured in ads for the Alzheimer’s Assoc. and in training videos for caregivers.  For the past 5 years our newspaper has been doing an article on Peter which appears on the front page of the Sunday-after-Thanksgiving edition.  They are following him ‘until the end’.  We were asked to appear on FOX news and with Tom Brokaw, and on and on.  It was exciting and we felt we were helping the cause. 

Yesterday, the day I read a portion of your blog, I put Depends on Peter for the first time.  It was long overdue, but I haven’t wanted to take that step. Two things you wrote on that first post I read, jumped out at me and made me realize that perhaps I am not alone in the thoughts that are constantly doing battle in my head. Shortly before Peter was diagnosed, I found out he had been cheating.  I was in the process of figuring out if i wanted to leave (yes, I did) when he was diagnosed.  “My parents raised me to take the high road, not the easy road.”   I stayed.  Then, when our public appearances waned and his life was not as busy,  I found out his “wandering” had continued.  He asked me for a separation “So I don’t have to lie to them (his girlfriends) anymore. “We could not afford two households, and I knew there was no one else who would care for him when things got bad, so I stayed.  I made his meals and washed his clothes while he went to bars and took trips with his girlfriend of the minute.  Since AD no longer afforded him the ability to cover his tracks, the kids found out and told me I should leave him.  My kids!!  But “my parents raised me to take the high road, not the easy road.” So, I stayed. I didn’t want my kids to end up having to take care of him when all the girlfriends figured out what was going on and left.  Which they did. I once again took off his wet and dirtied clothes and once again scrubbed the floor. Then I went and got the Depends .  “This…this…cardboard” he said as I put them on him.  “It will be ok.  This kind doesn’t get wet” I said.

In September, Peter lost his balance, fell head first into the street and suffered (what I believe) was a concussion.  He was taken to the hospital via ambulance as he had a large gash in his head for which he received stitches.  He has not been the same since.  He was in the hospital for over a week, then rehab as he was no longer able to stand nor walk.  After two weeks of rehab and no improvement, insurance refused to pay any longer and he was to be released.  However, they would not release him to my care as he is considered a “two-person assist”.  I was given three days to find a facility that would accept him.  On Oct. 18, he was admitted into a personal care home.  From the moment of the fall he dramatically changed and has not recovered…at all.   He can no longer stand, walk, see (very little), speak (very little and not intelligible), nor feed himself and is completely incontinent.  He only knows who I am on rare occasions and doesn’t recognize our children at all.  He is not aware of his surroundings. Sometimes, though, as I try and make some conversation which he shows no sign of understanding, he begins to cry.   It has been a very difficult few months.  I wish I could say life has become easier, but it has not.  Under the circumstances, I thought I would have a sense of relief, but I do not.  I just find myself on another path of dealing with this disease, completely as unprepared as I found myself on the past paths. 

          -Thank you J for sharing such a personal and intimate look into your new life.

This time of year is really hard for both Henry and me. I don’t know about you but I feel I am doing more and more and Henry is unable to do less and less.  I can’t believe what a decline I have noticed within the past few weeks.  I don’t know if it is because he feels down at this time of year or that his situation is progressing. I am really scared as even though I know what is happening, I don’t want it to happen.  I try to do all the things we used to do together, having to see if there is some kind of happy response.  We went for our Christmas tree and when he was well this was such a happy time, picking the tree, tying in on the car, getting in the house and then starting to decorate it.  This year it was entirely different.  It was like Henry didn’t care one way or another whether the tree is there or not.  It seems that everything I am trying to reinvent of our past is not working and then I become depressed because I have to stop and say listen what is wrong with you, it is never going to be like that again.  Even though I know this, I always have a glimmer of hope that one day all this will go away and he will be like he was 25 years ago.  I miss those times.

Our tradition was on Christmas Eve we would have all my family get together for a big dinner and celebration with my Mom and Dad in addition to all the children, grandchildren, etc.  and Christmas Day, we would celebrate a traditional Hispanic Christmas with Henry’s entire family.  I am trying to keep my Mom and Dad’s tradition of having the entire family over and I have decided do this the past few years because I feel if one of us don’t try to keep our family together, we will be stranded all over the place and sooner or later everyone will be parted from each other.  This year, I am hosting the Christmas Eve tradition again, but in all honesty Karen, my heart is so heavy that I am just going through the motions.  I am scared how Henry is going to be because one moment he can be fine with people and the next moment, he can either be very withdrawn or to the point of becoming angry and being embarrassing as to what he says.   Even though people know the situation, no one really knows what it is like unless they live it on a daily basis.  The different mood swings, the point of being frightened, the crying as to why or what is happening….Even though people say they understand, they really can’t imagine how difficult it is just to keep a somewhat normal daily life.

Henry spends most of his day watching TV.  He is afraid to go outside without me because he is afraid of getting lost even though I have the Medic Alert for him.  He tells me he is happy being with the dog until I come home from work.  I don’t know if this is such a good idea and have tried even with the Doctor’s help but no accomplishments.

-Thank you Denise for opening up to me and for your very kind words.

My husband was diagnosed in February of this year with Early Onset Alzheimer’s at the age of 56.

He retired as an Alabama State Trooper in July 2010, due to what we were told after a hospital stay was stress and anxiety. He started being treated for stress in 2007. He began misplacing things all of the time. He always thought we were moving his keys, watch, wallet, you name it. He was a bomb technician, firearms instructor, Swat team specialist and also a contract employee for Homeland Defense as an instructor, in EOD and Haz-mat. He was very educated and was a highly respected law enforcement officer for over 33 years. He started having problems with money and numbers in 2010, which increased his stress levels. He was taken to the hospital, for what they thought was a heart attack and after a battery of tests, the doctor said it was stress and he needed to retire. So we did. He worked part time at a friend’s gun shop, only to become agitated on a daily basis. He had problems completing the background paperwork for gun purchases, also with making change, etc. We went to our family doctor several times in 2011 and in 2012 he had a brain scan done and he told us it was stress causing mild cognitive impairment. He scored 23 on the mini mental evaluation in his office. He changed his medication once again and told us to reduce stress as much as possible. There were so many times I just wanted to leave, but I loved him with all my heart and couldn’t do that to our children as well. It scares me the thought ever went through my mind. We have three sons all living at home. Our youngest is 13, our middle son will be 21 in January and just graduated the police academy and our oldest is 22 and is in his 4th year in college.

We went back again in August of 2012, he repeated the mini mental evaluation and he scored 21. Two weeks before our appointment for the neuropsychologist testing, we found out our insurance didn’t cover mental health, so our portion of the bill was $950.00, due at the time of the visit. We didn’t have the money, so I called and asked for a referral to a neurologist and we were able to get an appointment in a little over a week. When they started asking him they day, the month, year, who was governor, what county he was in, the list goes on and he couldn’t answer most of the questions. I was in a state of shock. They did an EEG and it showed slowed brain activity, they started him on Aricept and he referred us to UAB and we were able to see the Director of Neurology. He is the most amazing doctor I’ve ever met. He scored in the low teens in the mental evaluations. He ordered a PET scan, but our insurance wouldn’t cover it, so he had a SPECT scan done instead. The doctor said it was basically an older version of the PET scan. He called me the evening after the scan at home. We had been home about three hours and he told me John had Alzheimer’s. He said he was pretty sure that’s what it was, but wanted to scan to confirm everything. He said he could not drive any longer and told me to apply for social security disability benefits. He is in the moderate stage of Alzheimer’s and he is too far advanced for any of the clinical trials. I cried after speaking with the doctor. How do you tell someone this kind of news? I knew something was very wrong for a long time, but was misdiagnosed for several years. I never in a million years would have dreamed this would happen to us at such a young age. I am 45 and John is 57.  Your blog reminds me of the overwhelming stress, the grieving for what’s been lost and what is ahead in the future. Bringing home the groceries and not getting any help because he doesn’t pay attention that I’m carrying in six bags at once. I don’t have to tell you, because you are living it too.

– Thank you Kimberly. You speak for so many.

posted by Karen in Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (5)

Our BIG Christmas Gift this year.

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Meeting our newest family member, Duke, for the first time. Dec. 2013.

For the first time in my life I own a dog. A beautiful, smart, sweet, 5 month old bundle of joy. Hard to imagine that at 43 I have never had a dog. There are lots of reasons why ,starting from when I first asked for one around the age of 4.

Through the years I have owned cats (many), fish, parakeets, a turtle or two and hamsters (ok, the hamsters were Frances’). After I got my first apartment, within a couple of months I had a kitten. So, I have loved having a pet, just never a dog.

We have lots of friends with dogs. But I don’t coo and cuddle and show much interest in their dogs. It isn’t that I don’t like dogs, I actually do. But none of those dogs are mine. None of those dogs have a history with me. They aren’t there when I wake up in the morning or go to bed at night. They certainly aren’t sitting next to me making sweet dog sleep sighing noises as I type away on my computer.

The kids have been asking for a dog for years. As most kids do, they want everything: Cats, dogs, birds, fish, flying squirrels, rabbits. You name it, they have asked for it at some point. But the dog thing has been pretty consistent for many years. I could relate. I used to want one too when I was a kid. Something finally clicked this year. They are 9 and 12, so they are old enough to help with the care of the dog. They are full of energy. They don’t sit in front of the TV or computer for hours so they can be active with the dog. They both are good with animals and have demonstrated (somewhat) with the cats that they will help out. This year, a dog was top of the wish list at Christmas for them both. (I have since found out that was a planned act of collusion.)

When I finally made the decision to get a dog, everyone I told had the same reaction,”NO. Don’t do it. Are you crazy? You know how much work they are? You already have too much on your plate. You are too busy a family.”

Well, as I have mentioned before, I am hard headed.

Guess what? We got a dog. A Border Collie from a rescue organization. Getting this dog was more cumbersome than having a kid. Referrals, more referrals, a home visit, follow ups required. If only every parent had to go through this….

Wanna know what changed my mind? Frances.

Several months ago she said something that honed in on my weak spot.

“Mom, you know if we don’t get a dog soon, it will be too late. I am almost 13 and in a few years I won’t want one anymore and I will have spent my whole childhood without a dog.”

Bam. There you have it my friends.

So, I started warming up to the idea and REALLY thinking about the pros and cons. The pros won.

I did research and realized that the dog would not only be great for the kids as we deal with Jim, but the dog will be great for Jim as well.

Whenever you ask Jim what his favorite animal is, his reply is always the same. A dog. He had a dog (Sasha) growing up and I have heard many, many stories ever since we met about Sasha. But when I would mention us getting a dog, he was always very adamant about not getting one. I am not sure why.

Now that we have Duke, he is very happy. Jim plays, pets, talks to and spends all day with our new family member. I asked him why he never wanted one when he is clearly so happy having a dog and his reply was, “because they are a lot of work and I didn’t think we could commit to that.”

Well, we have and it has been great. So far anyway. I don’t want to jinx ourselves. We were very fortunate that the foster mom taught Duke many things before he joined us.

I think I made the right decision. All of us have bonded with him. Brad has been having a hard time with the obvious decline Jim has shown in recent weeks and now that Duke is here, Brad is happy and focused on something else.

Frances sees Duke as someone to take care of and another reason to make some lists and to work on a project.

Jim has a companion and a buddy.

I have a family that is happy and relaxed and able to think about something other than Alzheimer’s. And I have fallen in love with him too. I miss him while I am away at work and worry that Jim is remembering to let him out or to put him in his crate. But it is a different worry than I am used to now. It is a worry that I have some control over. The obvious irony is not lost on me.

Yes, a dog is a lot of work. Yes, we are a busy family. Yes, they are expensive. Yes, it will be more responsibility for me. Yes, I now have to make sure Jim is cognitive and aware of something else during the day. Although we have had a few minor incidents, Jim has stepped up to the plate and I think this has been really good for him. It has been a rough holiday season and Duke is a very bright spot for us all.

The smiles, laughter, excitement, happiness and joy far outweigh any of the negatives that were thrown at me.

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

Christmas Cards in the Mail yet?

Saint Nicholas, Alzheimer's Disease, holiday tradition

Frances and Brad with Saint Nicholas at Endview Plantation. We took them for years. Dec. 2008.

Tis the season for cheer. And lots of friends gathering round. This is the time to sing songs you have been singing all of your life. Now is the occasion to send out cards to everyone you now know and everyone you once knew. Yep, it is time for the Christmas card drudgery.

Ever since I moved out into this great big world on my own, I have sent out cards every year in December. Except for last year. And the year before. And the two years before that. Each year I would promise myself I was going to find the time and the energy and the wherewithal to write the accompanying letter and get a nice family photo copied 100 times and we would sit down and make our cards. Yes, you read that right. Make our cards. I am NOT a crafty person. I have talents but crafts is not one of them. But, when the kids were little we started a family tradition of sitting down together and making our cards. In my mind, that was going to help us bond and we would create a magical card each year, topping the previous years’ masterpiece and eventually we would have a collection to put on display each year.

Well, about the time we really began settling into this tradition, Jim started having some symptoms that something was wrong. Which is a delicate way of stating that we were having trouble with our marriage and I wasn’t feeling jolly, delightful or ready to spread cheer to all of our friends on the mailing list.

Dec. 2009

Dec. 2009

So the first year we missed our cards, I told myself we would make New Year’s cards. We had the paper, the stickers, the markers, and the whole shebang of supplies. And then the second and third year, I fooled myself again into believing we could still do this. We didn’t. I didn’t. There was no way I could wrap my head around doing it. I briefly thought of doing the simple photo card and being done with it, but that would break our tradition, admitting I was a failure as a Mom and as a future Martha Stewart, and I am a little hard headed. So, no cards were done for 4 years.

Now it is that time again. I haven’t made a card, but my very artsy daughter, Frances, has. She has made 3 cards and is determined to make it to 10. I ordered the photos. We have 3 cards addressed, stamped and ready to be mailed. I might even use some of her supplies and make a few when I find a spare moment or two. The letter? Not going to happen. What would I put in there? Oh, life is great. We are watching Jim progress with Alzheimer’s Disease and have no idea what our life will be like next year at this time. Merry Christmas.

Alzheimer's Disease, tradition, Saint Nicholas

Dec 2010

I must remind myself many times a day of how we never know what life holds for us. I must remind myself how down I get each year now at this time and how each year we end up having a magical, memory making holiday.

This year, I am struggling, but I do feel stronger and better than I did last year. I fight off my negative thoughts and my bitterness and my anger each moment I am awake. Sometimes I do a great job and other times I should be fired.

I miss Jim so much during Christmas time. I miss our discussions of what to get the kids and our families. One year we hired a babysitter, took all the toy catalogs we had gotten in the mail and sat at a restaurant pouring through them together coming up with ideas. I miss sitting next to our lit tree after the kids are in bed, just looking at the lights and sharing quiet time together. I miss feeling excited, wondering what neat idea he had thought of for me under the tree. I miss his help decorating, doing the cards, singing songs, watching movies and so much more. He still watches the movies and he still throws out a hum (actually lots of hums) during Christmas songs, but it isn’t the same. He is here, but he isn’t here.

We will carry on our traditions for as long as we can. We may start new ones. We may lose a few along the way. I am grateful we have each other. I love my family. I am so very, very grateful we are together as a family. I am grateful we have so much, when so many are in need. I am grateful it has been such a great year. I am grateful for all I have; yet I still feel so sad and so alone.

I miss Jim.

Saint Nicholas, Endview Plantation, Traditions, Alzheimer's Disease

Our final visit. Sad that this tradition has ended. Dec. 2011.

 

posted by Karen in Uncategorized,Younger Onset Alzheimer's Disease and have Comments (7)

The Happiest Season of ALL…

Christmas, Alzheimer's Disease. Frustrations

Jim and Frances, Christmas Eve, 2009.

Every once in a while I have a hard time finding the appropriate words to share with you. Oh, I have words forming in my mind; swirling and circulating, but they aren’t always appropriate and necessary to share. They are words that I try to push away: like sweeping wet dirt on rough concrete. The top layer moves, but you can still see the remnants after the broom passes.

I know the holidays are hard for Alzheimer’s families. I know this, yet I try to think that our holiday will be different. Not like others going through this same shitty cycle. Last year, as I was talking to a good friend, I was lamenting that I didn’t know if that would be our last “good” Christmas with Jim and that I needed to make it special and I didn’t know how he would be this year. She very sternly replied,” You don’t know what is going to happen. THIS may be the best Christmas ever and next year may be even better. You can’t sit around thinking these things because you just don’t know. You need to just enjoy this Christmas.”

Boy, was she right. Last year we had an awesome Christmas. We probably had the best one ever. It was relaxing, it was emotional, it was special. We spend every Christmas at my parents. Last year there had been a health scare between Thanksgiving and Christmas in my family and as a collective whole we ALL decided to scale back, not do as much and to enjoy each other. It was wonderful. It was exactly what my dear friend had told me it could be.

Last year Jim was having some trouble putting the greenery/lights up on our front porch. So, another awesome friend stopped by and put the decorations up for him. It was a simple gesture, but it saved Jim hours of grief and stress.

This year, I completely had forgotten and when I left for work on Monday asked Jim to put the greenery/lights up on the porch, as he has done for as long as we have been together. While I was sitting at a lunch meeting, Jim called. I answered and heard him crying.

I just can’t do it. I can’t put them up.

 Why? Why did I ask him to do this? Why do we have to decorate our house for Christmas? Why can’t I find the time to do everything? Why? Why? Why? I told him I was sorry, that I should have never asked him to do that and not to worry about it.

There really is this very fine, delicate line to walk. I have to give Jim tasks to do, yet I must make sure they are tasks he is able to do. Sometimes the “simplest” thing he did just a week ago is now something that seems foreign to him. Sometimes I forget he can’t do it. We spent years learning each other and setting our “marital chores” in place. You know what I am talking about. In every marriage there are the things one spouse does and other things the other spouse does. It is hard to take the expectations of them keeping up with their side of things off the table. On top of that, Jim is still aware of what he isn’t able to do and it is a very hard pill for him to swallow. Actually, he does a fantastic job, but I know it hurts him and it makes him sad. Sometimes when I don’t give him anything to do, he just seems to wander around our tiny house, lost in thought or trying to figure out what to do. I am not sure. But either way, he does better with a list of items he needs to get done.

He stood by as I strung the tree. He took 3 days to put the candles in our windows (no, we don’t have that big of a house). He watched Frances put the lights on the front bushes. He got confused when I asked him about wrapping paper.

Yes, I find it hard sometimes to write words that are appropriate to share with you. Not because I don’t have a lot to say. But because I am hurting. I am sad. I am depressed. I have a problem that I can’t fix. No one can. And why bitch and complain when there is no solution? Because it makes you feel better. For about 30 seconds. And then you feel bad. REALLY bad. Because you know it isn’t their fault. And then you start the cycle over. Feel Bad. Bitch. Feel ok. Feel Bad. Bitch. Feel bad about bitching.

It’s the happ, happiest season of all…….

 

Alzheimer's Disease, Younger Onset Alzheimer's Disease

Frances and Brad, Christmas Eve, 2006.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (5)

Imagine

alzheimer's help

Please try to imagine something for a few minutes. Imagine you are not quite middle age, with fairly young kids starting to get involved in lots of activities. You have a fairly good social life, with a tiny bit of disposable income. Your marriage has weathered plenty of storms and the two of you have decided to stick around for the long haul while working on re-connecting. You are just cruising through life with your own fabricated worries each day. You work part time because you want to be able to take care of the kids when they are out of school. Your husband works full time and travels quite a bit so you get some time by yourself as well as time together.

Now imagine that your spouse starts saying really strange stuff. Not all the time. But just enough to be really annoying and become increasingly worrisome to the point he starts going to doctors and getting lots of tests. The two of you start therapy to no avail.

Now picture sitting across from a doctor, in uncomfortable chairs not really sure if you should be holding hands or taking notes. You hear words that you aren’t familiar with but are being said in a way you know means something is bad. Really bad. You want to cry, but your body has decided a form of shock is more productive than tears. You ride home together without really acknowledging what just happened. You search your mind for something positive to say. You want to revert to the old standard,” We will do some research and find a cure. We will beat this.” But you just heard things like, ”no cure” “no current treatments or course of action” and “start looking into power of attorney paperwork”. The two of you get home in time to pick the kids up from school and start the normal routine of life. But you have this new underlying thing ticking away inside of you. You know that you need to talk. You know that you need to plan. You know that you should be falling apart at this very moment, but instead you are planning dinner and checking homework. You stare blankly out the window in front of you, above the sink, cleaning chicken as your 5 year old is singing. Something about wheels on buses. You don’t really acknowledge any jokes or smile. The kids don’t understand. But you can’t tell them. You can’t burden them with your new secret. And you certainly don’t want to finally open the floodgates in front of them.

All of a sudden, your whole world has been turned upside down. Or you know it will be. Right now, everything seems pretty status quo. Nothing has really changed a whole lot. That will come in minuscule increments over the coming years.

Imagine waking up the next morning and each morning for the next 4 years,and as you slowly come out of the fuzziness of slumber, you have a flash run through your mind. The doctor. The words. The emptiness that is growing inside of your chest becomes larger and common. You heart aches and breaks each day as you helplessly watch your husband morph into someone you don’t recognize and don’t know. Can you feel the pain of holding them as they cry? Can you see the scared look in their eyes?

Can you picture the tears that start to fall when you least expect it? Now when you go to the Hallmark store to purchase a card, the words printed on the card seem like ironic, bitter wounds that are so painful you can’t even grasp not feeling the pain. Aren’t there any cards that don’t have something about “forever”  “grow old together” or “dreaming of the years ahead”?

The kids start to notice things. You finally must tell them. You aren’t sure what words you should use to spare them pain but at the same time provide knowledge and understanding. You start to worry. About everything. Ruining the children and their childhood. Finances. Relationships. Your home. Finding a job. Long term care planning. Research trials. Wills. Directives. Then one day it hits you so hard, so fast and so thoroughly you are not sure that you can move, breathe or think; this disease that has no cure runs in his family. The kids. More research, more questions and a mountain of worry fill your world.

How would you feel if you were no longer in the position to dream of a better life? What would you work hard for and plan for if you thought it was hopeless? Can you put yourself at a social gathering, trying to explain to friends that don’t understand, don’t see what you see and who suddenly seem a million miles away? Can you feel the heartache and the excruciating loneliness that starts to seep into your core? Do you really care anymore about anything? Are you able to see outside of your own world of pain and hurt and anger and isolation to remain a stable, sane part of society?

Eventually you are trying to navigate the very arduous social security disability tightrope, which is like having to deal with the DMV but with 100 times more paperwork, follow up and waiting. And when you finally hear back from them, it isn’t because you are done, it is because they need more paperwork and have more questions.  By this time your body is in perpetual slow motion and your brain is constantly feeling as if it is in overload and trying to shutdown. You wake up only when you have to. Suddenly you are working full time while your husband stays home. You quickly realize that your life before had been pretty damn good. Those days of volunteering at the kids’ school are gone. No more jogs or walks during the day. No more TIME to clean the house. Can you see yourself flipped upside down and shaken to the core while trying to work, manage a home and make every single decision in your family’s realm?

What would you do to pull yourself out of your fog? How would you smile and laugh and dream and feel love if you always had thoughts of death and disease running through your mind? How long could you live, knowing your future was going to entail watching your spouse simply forget who you are, who your children are and how to care for himself? But you don’t know how long the process will be. You could endure this for a couple of years or maybe 20 years. You think to yourself; I will be a widow when I am 53. But only after a very long road of watching him suffer and simply stop being himself and having to take care of him. Then I might have to take care of the kids. The nightmare doesn’t seem to have an ending.

You stop returning calls or attending parties. You can’t find words to put together to make a sentence that anyone would want to hear. Imagine going through the motions of life and feeling it is a waste of time to plan for anything past the next 5 minutes.

Now, feel the strength from within you finally breaking through, like a baby chick pecking out of its’ shell to begin life. It must search slowly, looking for the right place to start and eventually jabbing faster and harder and stronger until it can break free and see the light and the world around it. You are only able to do this with invisible arms reaching through to help wrench you out of the sticky mess while you are being pulled back into the darkness. The arms that surround you are family and friends who do not let you stay sucked away in your own misery and depression. The hands grab you: lovingly and forcefully tugging you towards something that has reason and meaning and life.

You have a mission. A cause. A purpose. You had never known you could do this. But you must. There is no other way to keep moving forward. You must be part of the solution, not part of the problem. It is the only thing that will allow you to find happiness, purpose and self worth again.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (15)