Archive for April, 2014

Change and Enlightenment

life changing quotes

Another first. Another heartbreaking moment I had to take in and keep in until I was alone. I must say that a talent which has always eluded me is becoming second nature….controlling my emotions and my ability to mask my emotions. I am not sure if this is a good thing, but it is a change and I will use it for the betterment of Jim. It is imperative that I not let him see each and every time I hurt or that I feel lonely or angry or frustrated. In my past, I have always had a bit of pride in the fact I am an open book. In a world full of games and hypocrites, I wanted to stand out as a person that you knew was telling it like it is and that you knew, really knew as a friend. Whether you liked me or not, there were no surprises.

Who is the Karen that hides her feelings and emotions? Who is the Karen that denies the pain and the desires?

I wore a shirt to work that had ties on the sleeves, right at the elbow. I couldn’t tie them so I asked Jim to. He couldn’t either. It wasn’t that he had forgotten how to tie a bow, he just couldn’t get his strong hands to be nimble enough to tie a bow.

I told him not to worry about it, no big deal. I needed to get out the door anyway. So I walked out with tan strings hanging down my arms and tears stinging my eyes. And then I sat in my vehicle and felt the sadness and grief wash over my body. I could feel the weight of realization crushing me. The immense sorrow filled me completely until I realized I needed to work and I turned on the radio, put the van in drive and began my day.

This is a tough, tough situation. Tough for me. Tough for Jim. Tough for the kids…..

I must focus on whatever is immediately at hand. I no longer plan past the day I am living in. I only deal with the immediate hours coming up . It is a coping mechanism that is unusual for me. I still catch myself trying to worry about something days away and I am somehow forced to re-focus on my current state of affairs.

I sometimes wonder what people think of Jim when they first meet him. Do they just think he is a little quirky? Do they think he is aloof and doesn’t care? I want to scream: “HE HAS ALZHEIMER’S AND WOULD NORMALLY NOT BE LIKE THIS!!!” What would a stranger think if he watched a grown man not be able to tie a simple bow? What does that parent at the ball field think when Jim makes a comment that really just doesn’t make much sense? I need a film of Jim 10 years ago to walk around showing off what a magnificent human being he was. He is. Just in a different way.

As upset as I get, I know we are blessed with so much. Inevitably something comes up that reminds me he is fading away from me, from us, which makes it hard to find those blessings and be grateful. But, then, life will happen that reminds me.

A recent reminder came in the form of timing. Timing is always everything.

This past weekend we had MANY things going on. I had to prioritize and plan. Everything about our weekend was scheduled down to a “T”. First, we would drive 4 hours on Friday afternoon to Brad’s Odyssey of the Mind competition, which was scheduled to take place early Saturday morning. Immediately after he was done, we would load back up and head to my hometown in Eastern NC for a 5 hour drive. We would make it just in time for my father’s induction in the local sports hall of fame. Then, Sunday morning, we would again be up bright and early to head the four hours back home, with stops along the way for softball and baseball games. Everything was timed perfectly and literally along the route we would be taking to get home anyway. It was a schedule that had been meticulously honed down and worked out with a lot of stress and decision making.

Everything was going as planned until Saturday morning when we arrived for the Odyssey of the Mind competition. The prop truck, which held the backdrop, costumes and set, was lost and would not be there in time. The team was re-scheduled for early afternoon. This one driver getting lost was putting a huge kink in everything that followed for our family  the rest of the weekend. All of the plans that I had meticulously worked out were immediately vaporized by a complete stranger.

At first I was mad. I was angry that I would now have to leave Brad behind or miss my Dad’s special night. I would miss his performance. I had been so grateful the two major events planned on the same day 5 hours apart were going to be doable so I didn’t have to choose between my Dad and my son and now it was looking like that wasn’t going to be the case after all. So I chewed on the new situation for a bit. Then it all became clear. I am not in control. I was trying to control all of the events and driving and circumstances. But I can’t control everything. The sooner I learn this lesson, the sooner I will be able to accept our situation. And that will be the sooner I can learn to relax and let things go.

So, I took a step back, realized this was happening whether I liked it or not and moved on. I was able to let Brad stay without us, be there for my Dad and get Frances to softball. Brad ended up missing his ball games, but we were all ok with that. Life goes on. There will be more games next weekend.

The one really sad part for me was missing the very exciting moment when the winners were announced for Odyssey of the Mind. I am proud to share that I missed hearing my son’s team called for first place. They will be traveling to Iowa the end of May to represent Virginia in the world competition, competing against 860 other teams from around the globe.

Now a whole new set of priorities, planning, scheduling, fundraising and stressing begins….

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

Ego anyone- My Beautiful Messy Self

Jim and I, circa 1998.

Jim and I, circa 1998.

There is a selfish and seldom discussed side of being an Alzheimer’s caregiver that is rarely examined. But, this blog is a “confessional” so I am going to try to put into words something that is extremely difficult to convey accurately through writing. I believe this is something that you really can’t understand, comprehend or feel unless you are living this life. Especially Younger Onset Alzheimer’s.

Along the way you lose the person who has stood beside you and made you feel good about yourself. I don’t just mean a compliment thrown out every now and again. I mean that one person who always thinks you are beautiful, even when you are not and understands you just need to be held and shielded from whatever horrible thing your world is throwing at you right at that moment. They would be who you would normally seek shelter with in the circumstances they are forcing you to face.

I have been trying to write this piece for a while. I was walking home from dinner the other night with a good friend and I was explaining to her I was trying to choose the right words and it was perplexing me to be able to get it just right. She agreed with how touchy a subject this can be, but also threw out to me, “but any lengthy marriage has the same issues. How can you make it stand out from a typical problem in any relationship?”

She was right. Don’t we all fall into cycles and get complacent with each other at some point?

I turned to her and said, ”Doesn’t Shawn still tell you how nice you look when you get dolled up?”

“Yes.”

My sexy black dress, Feb. 2014

My sexy black dress, Feb. 2014

Well, Jim doesn’t. Recently, I was invited to attend a gala. I took a girlfriend of mine as my date and put on a sexy black lace dress. Got my hair done. Put on a little extra mascara and even a little eyeliner. It wasn’t until she and I were standing in line for a drink that she leaned over and whispered to me how beautiful I looked. I literally (no exaggeration) caught my breath. Not because I was surprised she told me this, but because in that moment, I realized Jim hadn’t.

I think what I wish to convey is not only how lonely it is as a caregiving spouse, but how it affects your own vanity. Not that I have ever considered myself a particularly vain person, I leave the house more often without makeup than with and just have a lot of confidence in myself regardless (I think all athletes have this trait. After all, you have to believe in yourself if you are going to be able to make that free throw with no time left on the clock.) But I have come to realize just recently how much I relied on the compliments and consistent underlying belief in me from Jim.

Now that those are no longer, how am I to know if I am looking good or not? Who is supposed to remind me that I am capable and I am smart and I am still beautiful with those unflattering pants on?

How egocentric of me to ponder the loss of praises when Jim is losing so much more and our children are losing so much more and I am losing so much more. The plain and simple fact is I am human. We are all human. Even in the midst of large catastrophes there are small stories of pain, heartache and even joy and blessings.

Jim was by no means a perfect husband, but he definitely had many redeeming qualities that made me a very lucky bride. One of the best was his support of me, no matter what crazy idea I had or organization I was becoming involved with, Jim became involved too and would always lend a hand, an ear or just silently stood by at the ready. Jim never shortchanged me with compliments and letting me know how much I meant to him. I know I still do and I know he still finds me attractive, but it really sucks not hearing it any more.

During our whole relationship, every time I would speak to Jim on the phone, he would tell me he loved me before hanging up. That is very sweet and I always appreciated this, but you know how a conversation goes. You think you are going to hang up, you say your good byes, your “I love you’s” and then remember something else you were going to say. So you have a few more minutes of conversation, only to have to go through the good bye’s and “I love you’s” again. After a while and after A LOT of repeated “I love you’s”, I was annoyed. Annoyed that our “I love you’s” were becoming so mundane and said without much meaning behind the words. I began to resent the monotonous sound of those words each and every time we would speak by phone, which at times could be five or six times a day. I certainly didn’t feel a lot of love each time they were said. It was more of a habitual ritual that has disappeared. Now, Jim tells me he loves me every week or so. There are so few of them, I wonder if I had known that one day Jim would stop telling me he loved me would I have cherished hearing them as much?

Isn’t one of the reasons a woman gets married because she always wants someone there to make her feel beautiful, desired and loved? Isn’t it part of the deal that when a spouse gets cleaned up and dressed up you tell them how nice they look and possibly even flirt a little? When you have a partner for life, don’t you expect to have arms to wrap around you to feel protected and guarded from the rest of the world?

I miss that. I miss getting fancied up and having Jim take notice. I miss feeling that someone had my back, no matter what.

This is such a lonely journey on so many levels and there are times that being surrounded by good friends helps. There are times that being hugged and snuggling with the kids helps. But I am a woman of 44. We have been dealing with this for 5 years now. Only recently has it started to bother me that I don’t have my own personal cheerleader anymore. I miss the hugs and comfort from my husband. I miss his ability to tell me that a dress does not look flattering on me or that I look amazing. Either way, knowing he was going to tell me the truth and was my own personal judge and jury is a loss I feel on top of all the other emotions I run through each day.

When I look in the mirror now, I see an aging woman. I see gray hairs that were never there a year ago. I see deep wrinkles underneath discolored skin. I see sadness and loneliness and a bit of regret. I see a body that is losing tone due to lack of exercise. I see arms that are getting flabby and thighs that are spreading. There was a time in my life that my husband would be able to reassure me I was still beautiful and still sexy and still worthy. Now he doesn’t notice if I change my hair or I have on a new outfit. He doesn’t seem to care and he doesn’t seem interested.

I miss that emotionally supportive side of Jim. Compliments on the dinner I have fixed. Doors held open. Noticing I have a cold or don’t seem myself. Telling me how beautiful I am, no matter what I am wearing or how good I actually do look at that particular moment.  Making me feel loved and desired even though I haven’t worked out much lately and when I look in the mirror I see an aging person with places getting softer and wider. A caregiver is known to be strong; we have to be. But there are ways we must become independent and self sufficient that aren’t discussed and seem trivial compared to the daunting tasks of financial decisions, housework, and overwhelming burdens of family life. I must now be able to tell myself that meal was indeed delicious and hold my own doors and believe myself to be beautiful without hearing those words said. Yes, I am becoming stronger and more independent than I ever thought possible, but I am not sure the trade off is worth the pain and loss.

 

messy-beautiful-450b-1

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)

Fire in the Hole

 

Our group from Virginia meeting with Congressman Scott Rigell

Our group from Virginia meeting with Congressman Scott Rigell

Jim had a great birthday. He turned 52. Hmmm. At one point in my life, that seemed really, really old. Now, it seems young. Not really young, but young. Much too young to have Alzheimer’s Disease.

Sometimes it is almost comical to meet someone new and through the course of the new relationship and conversations explain to them that Jim has this disease. Nearly every single person is taken back. They are a little shocked. You can watch for it, wait about 10 seconds after you tell them and BAMM. You see the complete confusion and then a bit of sympathy and then, if we make them comfortable, calmness and acceptance. All in less than a minute. How I wish our journey through this were so easy to see and work through.

Our visit this past week to D.C. was a quick one. We were able to learn a lot and visit with advocates we have met through the years and re-connect and commiserate together. There are some really awesome and amazing families that are dealing with the same thing Jim and I are, they just don’t have a blog. They have the same pain and suffering and the same desire to help. They have the same needs and the same worries. There are so many of us, it is really scary.

We were able to relax a small bit and we were able to be part of the solution. Jim was awesome. He was full of life and vigor, much more so than I have seen in him in months. It was great to see. I still had to help him with some minor things that last year I didn’t, but overall, I could see his spirits, his demeanor and his thought process had gotten a jolt. He was ALIVE again. Not that he isn’t normally, but in D.C., Jim was witty and chatty and really happy. I loved seeing him this way. He didn’t shave to meet with our elected officials. I didn’t say anything and it didn’t matter. He didn’t put on a tie. It didn’t matter. He couldn’t remember everyone’s name or who we met with or how old he just turned. It didn’t matter. He was still smiling and happy and we had a good time. Again, I was reminded how much more patience I have with him when the kids aren’t around. A few days later I spent 2 days with them without Jim and also had plenty of patience. I somehow need to expand my bubble of patience to deal with all 3 at a time…..a work in progress but one I will not stop striving towards.

Life is so full of challenges. We all face them. Some are much harder than others. Everyone at some point in time faces heartache and pain. It is how we deal with this pain and heartache that will determine the future from that point forward. When the pain and heartbreak are stretched out over years and years, it becomes harder to keep that perspective and stay the course.

While in D.C., we walked the hallowed marble halls of Congress. The first time we walked them I was so nervous I could have thrown up. Ok, not really thrown up, but it was really nerve-wracking. Our first year, I could feel my heartbeat in my chest with sheer nervousness. I was going to be meeting and speaking with someone much more important than me.

This year, my heart skipped beats again, but not from nervousness. I am no longer timid or shy: I have realized that in the 5 years since Jim was diagnosed, there have been no changes in treatments or any new breakthroughs that will stave off this disease. Now when I march down the Halls of Congress my heart beats with determination and I can feel my blood pumping with my resolve to be heard and with the pressure of a time bomb ticking away. When I hear my heels echoing down those spacious hallways, I think of the men and women behind those doors and how they have the power to change the course of my children’s life. They can save Frances and Brad. They can, with one fell swoop of a pen, save my children from falling victim to the same horrendous fate of their Grandmother, Uncle and Father. Now when I walk those expansive halls of Congress, I do so without fear but with shear determination and with no sympathy for excuses. We do not travel all the way there to be given pretexts and put offs. We do not make accommodations so that others will feel comfortable in their ineptness.

There is no more time. The time is now. How can anyone, with any kind of intelligence not see the necessity and urgency? It is written in black and white.

Yes, Jim had a great trip and so I had a great trip. Now we are back to the grind of everyday life.

Thank you to everyone that participated in the forum or contacted their elected official to let them know how important this conversation is. Please keep up the fight and the battle. We are making progress and we will win. We will all keep moving forward until we find a cure.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (4)

The Purple Brigade are Coming to Town

 

Younger Onset Alzheimer's, Advocacy, Washington D.C.

Jim and I at the Capitol, April 2013.

When I participated in a roundtable speaking engagement recently, I was privileged to meet some wonderful caregivers. They were from all over the country. They had stories to share, just like we do. They were wonderful and I loved meeting them and listening to their frustrations, their sadness, their daily struggles. We all could commiserate together and naturally form a bond. It seems whenever I meet other caregivers, we almost instantly form a bond. It is just what we do. There is an unspoken respect, love and support that comes along with the participation in the caregiver role.

Jim and I attending the National Alzheimer's Disease Advocacy Forum in Washington D.C., April 2013

Jim and I attending the National Alzheimer’s Disease Advocacy Forum in Washington D.C., April 2013

As we shared a few laughs and heartaches, I spoke about advocacy for Alzheimer’s. I explained that Jim and I have become quite outspoken and travel to Washington D.C. and write letters and ask for help on a regular basis. The table got quiet. Something suddenly dawned on me. So I asked them, “How many of you have asked your representatives to fund more research or have even spoken with them about your story?”  Guess what? Not a single one raised their hands. I was really surprised. These people are passionate about needing help. They were willing to come and participate in the roundtable. They wholeheartedly want to help. Yet, they had never thought to contact the people that can REALLY make an impact: Their representatives. Well, you know me….I made them promise right then and there that when they got back home they would contact their representatives and ask for help.

Jim, April 2013.

Jim, April 2013.

Tomorrow, Jim will celebrate his 52nd birthday. Part of me feels like I should throw together  a huge soiree with our friends and really celebrate how awesome he is. But, it is the same time as our annual purple brigade pilgrimage to Washington D.C. to meet with (hopefully) our representatives and join others from around the country who are just as ardent supporters as we are. We have made friends with some fellow advocates that we see  each year. (this is our 3rd year)

I asked Jim before we decided to go if that was how he wanted to spend his birthday. I explained to him the date coincided with his special day. He didn’t hesitate. He didn’t flinch. He stated right away and with certainty that “yes, I want to go. That is much more important.”

So, off to D.C. we go.

I know many of you that read my words will be with us in spirit. You will be on our minds. You will be cheering for us and encouraging us. Thank you.

I ask EACH of you that read these words to help us. PLEASE. You don’t have to travel to D.C. to have your voice heard. Your representative has a local office. You can visit there. Your representative has a website and has a way to contact them through that site. Your representative has an address and will receive your letter. Your representative has an aide that will be answering the phone in their offices and you can call and leave a message. There are many ways to contact your Congressperson. There are NO excuses why you don’t.

Here is a link to a previous blog post I wrote about this subject. You will see two links ¾ of the way down. Click on these links to find out who your representatives are and how to contact them http://missingjim.com/2013/04/26/375/

Please don’t tell me you are too busy. If you have time to watch a 30 minute TV show, you have time to do this. If you have time to read a book, you have time to do this. If you have time to play Candy Crush or some other video game, you have time to do this. NOTHING is more important. Our voices need to be heard. There are millions of lives that are depending on enough money being thrown into research to either find a cure, a vaccine or a treatment that allows the disease to lie dormant in a person. If you can’t be bothered, then you aren’t allowed to complain when someone you love is afflicted and you are sitting at the doctor’s office waiting for them to tell you what medicine to take that will make them better. Unless something major happens in the research world, that scenario will NEVER happen. You will sit in the doctor’s office, in shock, waiting and hoping and leave with nothing but an appointment for 6 months later.

This is a birthday gift you could give to Jim that will not only keep on giving to our family, but to millions of others as well. Help Jim celebrate by writing or calling your representative right now.

So, while Jim and I can, we will descend on the Capital of the United States, purple banner slung across our shoulders, along with hundreds of others who are able to do the same. We will speak and we will find out soon enough if our voices and our pleas are heard.

Meeting with Senator Warner and his staff. April, 2012.

Meeting with Senator Warner and his staff. April, 2012.

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)

Searching for Superwoman

Washington D.C. Cherry Tree Festival, April 2010

Washington D.C. Cherry Tree Festival, April 2010

I have been doing EXTREMELY well the past two months with losing my patience with Jim or the kids. I have come to realize that I am the epitome of patience with Jim by himself or the kids by themselves. But get all 4 of us together and there is a storm on the horizon.

I work really hard at my unflappability. Patience and calmness. These things are not easy in a fast paced environment like our household. There is always something needing to be done; places to be, homework to do, instruments to practice, food to be prepared, animals to tend to….I mean honestly, the list could go on and on. Just like most American households with active children living in them there is just never enough time or energy to get everything done in a day.

But, my NO YELLING streak was broken this week. I had been doing so well.

Every Monday I have to leave my house when the kids are just waking up. I have to travel nearly an hour to work. On these days, I stress. A lot. This past Monday, I went through my whole day with no major hiccups (i.e. no calls from the kids). Then I get home and it is dinnertime and I am trying to figure out what to fix and Brad comes in the kitchen. He is not feeling well. He is starving (not unusual wording from him at any given time) and lets the cat out of the bag. He didn’t eat lunch because he forgot his lunch on the counter. He forgot to pack it up. So I instinctively ask Jim why Brad didn’t have a lunch. I ask Brad why he didn’t call us to let us know. I ask Jim what happened. All the while I am picturing Brad sitting at the lunch table with all the other kids stuffing their faces while he sits hungrily longing for a morsel.

A rage builds inside of me as I ask questions and find no good answers. Why do I still try to find answers? Why must I do this same routine? When will I accept what is happening and JUST LET IT GO?

Jim finally makes the mistake. He tells me he saw the sandwich on the counter and ATE IT. Yes. He ATE his son’s lunch. Even as I write these words days later I feel the churning and frustration build inside of me. I am very protective of my cubs. And one of them going hungry, even for one meal, is unacceptable to me. Then to find out that Jim knew he had left his lunch and proceeded to eat it instead of putting two and two together and realizing that Brad needed something to eat or else he would go hungry was just too much. I snapped.

I am constantly trying to be two places at once. Usually work and home. Most people I think are the same. Especially when they have kids. Especially when they have extenuating circumstances. But what is the answer? I can’t quit my job and stay home. We need the money. I can’t afford to hire someone who can come in and organize the family while I am away. Besides, I feel like with a 10 and 13 year old, they are old enough to take some responsibility. Because I feel this way, I interrogate Brad on why he didn’t remember his lunch. Why he didn’t call. Why, Why, Why?

But the real person I was angry with was myself. Me. I wasn’t there. I wasn’t home to make sure he took his lunch. I wasn’t there to assist Jim. I should have done something different to make sure this didn’t happen. Guilt. It has engrained itself into my very core. Guilt for yelling. Guilt for needing help. Guilt for not being there when someone needs me. Guilt for forgetting a commitment. Guilt for missing a deadline to turn in fundraising money. Guilt for not being able to fix Jim.

Yes, I know most of these things aren’t my fault. But when you have the personality I have, there is an underlying belief that you can do anything and everything. You are capable of doing it all. And up until just recently, I pretty much was able to do this. But I am slipping. As Jim slips into a deeper hole, I slip too. Even as I struggle to reclaim myself and my abilities I catch myself faltering. I feel my capacities shrinking and somehow becoming just out of reach. I feel them flitting away almost daily. With each thing I forget or can’t do I realize that I am losing ME. The real me. The me that is being replaced by someone who can no longer keep up. The real me that would even care.

I am exhausted. I realized that with such potency and surprise when I got a brief respite in San Diego a few weeks ago. The pace of working full time, taking care of two kids and Jim, bills, taxes, schedules, meals, shopping, the yard, the laundry, homework, activities, freakin’ school projects, friends, birthdays, holidays and advocacy……

I am human. I will realize this soon. And I will change. I don’t want to. I want to stay the same Karen that can do it all. That can volunteer and do a great job at work and who has a clean home and who keeps track of her kids’ schedules. Whew! It wears me out just reading it all.

Last year, when Brad was in 3rd grade I had a really harsh reality shoved into my face. We were about ¾ of the way through the school year. Brad brought home a grade that was quite unusual for him on a test. So, I started paying attention. I started asking questions. I did a little investigation. I was stunned. And ashamed. And terrified.

It came to my attention that NO ONE was helping him with his homework. I hadn’t realized that Jim wasn’t helping him when they got home from school. By the time I got home from work, Brad would tell me he was done with everything and I just went along. Jim never said much and I just figured Jim was helping him and reviewing everything. That is how it had been in the past. But as Jim had progressed, this small detail of parenting had slipped away. No one told me. Hello. Isn’t someone supposed to tell me each time Jim slips or progresses and something changes???

So, I figure out that my brilliant kid has been making all A’s and B’s all year with NO HELP from home. With anything. My level of admiration for Brad went up a notch and my guilt went right along with it.

There are so many things that get “thrown” at me weekly. Things I once took for granted that are no longer viable. It is a painful process which has no manual or guide. You basically figure it out as you go.

Tomorrow, the kids have dentist appointments. At the same time. Which is a good thing. Except, I made the appointment 6 months ago when I didn’t have anything going on tomorrow. But now I do. I have to be at work, 45 minutes away, 2 hours after their appointment time. So, I have stressed over this for the 3 days I have been in the realization that this time frame could be a problem. What to do? If I try to reschedule their appointments who knows how long it will be before I can get them in again. If I tell my boss I will be late, that will be another notch in my never ending notches of inexcusableness. So I stress. And I fret. And tomorrow I will find out how quickly the dentist office can clean and check two sets of teeth.

 

***Side note: Dentist awesome. Teeth cleaned. No cavities.  Kids to school and me to work in plenty of time. Sometimes the universe smiles on us all.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (14)

Apples anyone?

Frances picking apples in Charlottesville, VA Oct. 2008

Frances picking apples in Charlottesville, VA Oct. 2008

Since Jim has stopped driving, our family life seems to have picked up speed. More decisions on which child gets to do which activity and I am constantly being pulled in two directions. I know, I know. I am only one person. I can only do so much. I can only do the best I can do. But I am hard headed. I am an over achiever. I expect to be able to do everything and be everything to everyone. It is hard to say “No.” I am getting better. Fundraising for the kids ball teams and schools, volunteering at school functions, meeting someone for lunch or coffee, or just deciding if we can even attend something all become overwhelming decisions or tasks. It all gets scrutinized and categorized. Life as we knew it is over. We are obviously onto a new stage of this not so fun game.

Yesterday was “Doctor Day.” It wasn’t too bad. Except for the part where Jim decided to tell the kind neurologist that I won’t let him eat our apples. We were discussing Jim’s weight, his huge eating habits, his exercise, etc., and he suddenly blurted out that I don’t let him eat the apples. What??? Let it be stated here and now that a few weeks ago I went to the store almost exclusively to purchase apples and came home with OVER 20 (the kids counted them). Within 3 days they were gone. I don’t eat them. The kids are gone to school most of the day. That only leaves one other person…..

So after we got home, I asked him about the statement with the apples. His reply, ”the doctor knew I was joking.” Ummmm. I don’t think so. I didn’t think it was funny at all. I know that elder abuse, or abuse of those who can’t help themselves in many forms and fashion is quite common. It seemed to me that the doctor thought he was serious. Then, for the first time, they asked me to step out of the room when he did his Mini Mental Exam. No explanation why. It left me to wonder, “Do they think I am not feeding him?” Let it also be known that Jim eats. A lot. I think I have mentioned this. We rarely have leftovers. I don’t mind. I don’t really prefer leftovers anyway. But he eats enough to feed 3 people in a day. Remember, I told you I would tell you about the Raisin Bran? He LOVES Raisin Bran. Always has since I met him. Now, I buy a box of Raisin Bran a week at Costco. COSTCO size people. I don’t eat it and neither do the kids. It is all him. That is TWO HUGE bags of Raisin Bran a week. It is so funny that this is the one thing that has remained such a staple for him. Years ago, early in our marriage, I used to get up and try to fix a “nice breakfast” for him. Something engrained in my Southern self. He would tell me he just wanted his Raisin Bran. Even if I had already produced a nice meal of eggs, waffles, pancakes, etc. No matter what else I had fixed, or how great the kitchen smelled, he preferred his common bowl of cereal.  I am not sure when he eats it but it must be in the morning and sometime while I am away at work. I never see him eat any cereal at night. He should weigh 300 pounds, but he has kept his weight even since getting off the Aricept (he lost a lot while on it).

I shouldn’t worry about what others think. I should be past that point. But when your husband tells the doctor that you won’t let him eat something and thinks it is funny, well, it is something you have to let go but at the same time you sorta worry about in the back of your mind. Like if your 6 year old were to go to school and claim you locked them in a cage all day or beat them unmercifully. It hits you in that spot that is vulnerable. I don’t need to shout out to the world how I am taking care of Jim. It doesn’t matter as long as he is happy, the kids are happy and he is taken care of. But it does become an issue if false rumors start.

Brad picking apples, Oct 2008

Brad picking apples, Oct 2008

 

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