Archive for August, 2013

I don’t wanna

Brad, Frances and me. May 2013.

Brad, Frances and me. May 2013.

I am tired of this shitty, sad life. And we are just in the beginning stages. Nooooo. I don’t want to do this. (Yes, I realize this sounds like a 3 year old. Right now,that is how I feel.)

I sometimes take a few moments to read “our story”. To go back and re- read my entries or read interviews and stories written about us. Damn. Our story is touching, jarring, sad and REAL. Actually, surreal. To live something and then to read about it is just so surreal.

I don’t want to be REAL. I mention “I don’t want to” a lot.  I don’t want to do this. I don’t want to feel so defenseless. I don’t want to speak. I don’t want to cry. I don’t want to yell. I don’t want to hold. I don’t want to watch. I don’t want to be defined by something I have no control over.

How to release yourself from an agony that is worse than prison? At least prison has a definite end date. How to protect someone you care so deeply about from a future of embarrassing moments? Moments they might not even realize are embarrassing?

What do you do to help someone that took so much pride in their dress and demeanor when they are no longer able to look put together on their own?

NO. I don’t want to do this. But I don’t have a choice. I feel trapped. Trapped in a time warp that I have no control over. No control over my own life for how many years to come?  No control over our families’ future or my future. No control over my childrens’ childhood.

I didn’t sign up for this; yet I am forced to partake and to make the best of it. What could be the best of it? I can’t see past the negative connotations at this point. I am hoping one day I can look back and find something positive.

Something positive for my children in watching their father become a person they can’t possibly understand or recognize.

Something positive for me being left alone to navigate mid -life and beyond.

Something positive in wanting to change an outcome that you see coming and falling terribly short.

Will I feel positive about writing this blog, speaking to groups, doing interviews and sharing our story with the world? Will I feel I made a difference in something? to somebody?

How to stay positive when all I want to do is run away and let someone else deal with this huge mess? This huge debacle that I don’t want to define me as a person. My children deserve more than to witness the slow demise of the person that personifies character to them. NO. I don’t want to participate in this unyielding tragedy.

But, I wasn’t given a choice. I wasn’t consulted and given an out. There was no picking what is behind door number 1, 2 or 3.  I had an out several years ago when Jim and I went to marriage counseling. He was driving me crazy. We were arguing a lot. I could have left. He could have left. We stayed.  I realized what he had before the doctors did. I could have bolted then and used the excuse “I didn’t know. I left before he was diagnosed.”  But I did know. Thankfully my parents raised me to take the high road, not the easy road. I am better than that. Being better than that really isn’t all it is cracked up to be in day to day life.

I am lonely. I am scared. I am frustrated. I am tired. I am helpless. I am….. so many things. Yet I can’t figure out that magic fix. That magic carrot dangling in front of me that allows me to figure out what to do to make this easier or better. Maybe there isn’t a carrot. Maybe it is just going to completely suck for the foreseeable future. How do you wake up each day with this thought and put a smile on your face and put your best foot forward?

It is the kids are the closest thing to a carrot I have. They give me the ability to get out of bed each morning and work all day and do it again the next day and the next.  They keep me focused on many things much more important than my own personal issues. They are losing something that can never be replaced. They are witness to their own childhood drama story to tell at neighborhood socials and gatherings with friends and colleagues. How this all plays out will define them as adults. How I help them and manage this situation will determine how their story will be told over cocktails, barbeques and in counseling sessions.

How I handle all of this will define me as a mom, a wife, an advocate; as a person.

No pressure. No pressure at 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 (13)

Can’t Stop the Leaves….

Jim playing softball at family camp.

Jim playing softball at family camp.

 

We are back from vacation and “normal” life begins again. Family camp was just right. I was so grateful, thankful and happy to have my parents with us for a full week. That doesn’t happen often enough and I am finally at the stage in my life that I actually appreciate the time  I can spend with them.

Why can’t I appreciate the time I get to spend with Jim? I want to. I know I should. I think I do in my own way but appreciating my time with him means focusing on the fact he is going to get worse and realizing I don’t have all the time I want with him. Why don’t we ALWAYS appreciate the time we have with those we care so much about? Why can’t we see how special all these moments collectively put together are as we are living them? We always take for granted those that mean the most to us; the ones we always expect to be there. One day, whether we like it or not, either they won’t be there or we won’t be there. What happens when the person you want to be there is with you physically, but mentally they are a little different? A little “off”? How do we relate to someone that looks healthy and the same, but can not figure out how to put batteries in a flashlight?

Yes, we had a wonderful family vacation. It was so good to see our friends at camp. It was so good to let the kids have some freedom and independence. It was so good to see Jim in his element; playing volleyball, basketball, soccer, softball and hockey. Honestly, I didn’t spend a lot of time with him. He was happy to play his sports and read a little. It was like nothing was wrong.

We tried playing a card game with him. He was having difficulty remembering the rules and how to play and what was going on. So the next night when we played, he abstained. I was hesitant….stop playing myself and just sit and watch with him or enjoy myself and play with my parents and friends? I played and felt torn the whole time. It is tremendously sad to watch him walk around,  searching for something he can’t seem to find.

JIm rafting the Yough River.

JIm rafting the Yough River.

We were able to go rafting. Years ago Jim and I rafted the New River in West Virginia. It was a blast. We both loved it and vowed to go again. This time we did the trip on less thrilling water, but he seemed confused on when he should paddle and what to do. I am afraid we won’t be going back again. That hurts. For so many reasons.

Something else happened the night we returned home that many caregivers deal with on a daily basis. I know this. I am aware that it is typical. I realize it is a symptom. But knowing something is coming and then actually having it happen are two different things. And when it does finally happen, it jabs my gut. It depresses me. It brings that reality of needing to appreciate our time together front and center.

Jim jogging around the lake.

Jim jogging around the lake.

I was up late working on our mound of laundry. Jim had gone upstairs to go to sleep hours before. When I finally went upstairs to go to bed, Jim was standing in Brad’s doorway.

“Jim, what are you doing?”

“I am going to bed.”

“No, that is Brad’s room.”

“Oh.”

I took the basket of clothes I was carrying to my room. When I returned, he was still standing in the doorway.

“Jim, what are you doing?”

“Going to bed.”

“Our bedroom is over here.” I turned the light on in our room and had him come look. He didn’t argue, he didn’t really say anything. He just simply went to bed.  I was emotionally unhinged. Another sign. Another stage. Another symptom. Another progression. There is nothing I can do to stop it. I don’t want to watch this brilliant, witty, athletic, handsome, loving, caring, dedicated, hardworking, fabulous man turn into something that I don’t recognize.

Like the leaves that turn each Fall. One day they are green. The next they have started to turn a little red or yellow or brown. Then one day you wake to a glory of colors and it looks brilliant. But it is a sign that the leaves are about to fall, billowing in the wind, eventually falling to the ground. There is nothing you can do to stop nature from it’s glorious cycle.

Knowing there is nothing I can do doesn’t make any of this easier. Knowing what is coming definitely does not make any of this easier. Seeing my husband confused, detached from conversations and void of emotions is already old. And our journey has really just begun….

Jim and Frances at Family Camp, Aug. 2013.

Jim and Frances at Family Camp, Aug. 2013.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized and have Comments (2)

Our favorite vacation every year.

 

The lake at camp.

The lake at camp.

After my last post that was so emotional, raw and REAL, I wanted to just fill you in on our week. WE ARE ON VACATION! Yes. A real vacation.

Every year for the past 4 years we have gone to family camp. The first year we travelled to a wonderful camp in Western Massachusetts. We all loved it. But it was a 12 hour drive. Then we found out about a very similar camp also run by the YMCA and it was only 6 hours away in Pennsylvania. So, we went and loved it too. We go the same week every year, so the kids have friends they reconnect with and so do Jim and I.

This year is even more special. My parents are joining us. I am not only excited about being away from work, the house, and life for a week, but I am excited about spending this downtime with my mom and dad. There is no cell phone reception, no tv’s and no internet. Just a beautiful lake, arts and crafts, a zip line, hiking trails, biking trails, volleyball, basketball, kayaking, and so much more.

In the mornings the kids go off with counselors and do activities with their friends. The grown ups get to go for trail rides, spin class, sailing or whatever they want. Then in the afternoons we can either hang as a family or hang with friends. Most of the time we hang with friends.

It has been great to see the excitement on the kids’ faces and hear them discuss all the stuff they are going to do with their cohorts. Building forts, playing games, swimming, making bracelets and just having a grand time doing a little of this and a little of that. Each evening there are activities as well.

Frances on a hike while at our first family camp in 2010.

Frances on a hike while at our first family camp in 2010.

I remember the first year we went to the camp in Massachusetts, I confided in a single mom I became friendly with that we were having Jim tested and thought he might have Younger Onset Alzheimer’s Disease. At that time, it was really  so inconsistent and fleeting and hard to see his symptoms easily. I also remember last year being so frustrated and angry as we were packing to leave. Jim normally would be the one taking charge of the bike rack and the luggage. But he was confused and unable to manage the bikes, the rack or the carrier to go on top of the van. I was sweating and just wanting to get on the road. Finally I just took the carrier, threw it into the back of the van instead of on top and attached the rack, loaded up the bikes and took off. But not before I had let anyone within ear shot know how I felt. Ugghhh. Another one of those unproud moments.

This year I don’t expect much. It is still frustrating when he takes things and puts them in various places that make it difficult to find and when he can’t really help with all he used to. But I am mentally prepared. I am knowing that he can’t and so I know I must.

Last year Jim had difficulties keeping up with when his volleyball games were. I am ready this year. I am bringing him a little pad of paper to write down all of  the things he is wanting to do and scheduled to do. I am so glad the kids get to see him in his element; playing sports and having fun.

We are at Family Camp. As a family. Together. Making memories. Keeping a tradition alive. Enjoying us. Enjoying life. Enjoying the moment.

The Flight 93 Memorial is about 45 minutes away so we try to make sure we go each year.

The Flight 93 Memorial is about 45 minutes away so we try to make sure we go each year.

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

I want the original please.

 

Jim and I celebrating New Year's Eve in Las Vegas, 1998.

Jim and I celebrating New Year’s Eve in Las Vegas, 1998.

Jim told me something last week that has really stuck with me. It has bothered me. It has confused me. It has just really befuzzled me.

“I need to find you another husband.”

Yes, he actually said those words. Both kids were gone and we had been able to spend more time together, just the two of us. Working on Frances’ room, going out to dinner, driving to and from the NIH. Talking. We haven’t done much of that lately. We still didn’t do as much as we would have 5 years ago, but we talked more than usual.

I didn’t know what to say to him. What an unselfish thought. But at the same time, Wow!

Let me be very clear. I don’t want another husband. I knew I was going to marry Jim after our first date. He knew the same. We have worked hard to stay together for 16 years. It hasn’t always been easy and there have been times we have both wanted to call it quits. But we fought hard to keep each other. Personally, I think Jim fought harder. He was 35 when we got married and was more mature and ready to be a husband and provider. I was still working on who I am (actually, I still think that) and what I wanted out of life,  figuring out how to be a wife and keep my identity. Jim has the patience of a saint. He accepted my growing pains and loved me more. He waited patiently while I circled around our life together being the independent, hardheaded woman I am. And he loved me even more.

We fought. We cried. We yelled. We whispered. We wrote letters. We went to marriage counseling. We travelled. We supported each other. We opened up to each other and kept secrets and confidence. We scrimped and saved. We spent and explored. We are united by love, by history, by vows and by family.

How could he say this to me? Did I want him to say this to me? How did I feel? I am still not sure. I love Jim. I have no desire to find another husband. The thought of starting over. The thought of meeting someone (hard), introducing them to my children (I think I am feeling nauseous), my parents (again), having those awkward first dinners with friends, filling in the stories of my life, listening to stories of his life, determining if he has a secret past that I need to be aware of, working out nuances that are unfamiliar…… No. I am not even remotely close to being ready or interested.

But then I think, I am only 43 and most days I feel like I am 23. It is all so confusing. Then I really think about Jim and us and our children. I think about the fact Jim has always told me I am most beautiful in just a plain t-shirt and no makeup. He loves me as me. Nothing fancy. Or fake.

And then it all becomes real again and hard and emotional and hurtful. He is still leaving me. Even if I don’t want someone else. I can’t have him. The REAL him that made me so giddy and happy and content with my life. I can’t have the man that loves me with all of my faults and my idiosyncrasies. I can’t have the person I want with me when I have wrinkles and turn gray and with just a glance will know what I am thinking or what I need. And I won’t know the same about him either.

For now, I still have Jim with me. I am so grateful that I do. I don’t know that I am grateful the way I will one day look back and wish I had been or should have been. During the rush and stresses of day to day life it is hard to be grateful for what you have right now. Don’t we always want more? Don’t we always want something better and something newer?

Not I. I want what I have (ok, maybe a new wardrobe or a new house.) But I don’t want a new family. I don’t want a new Dad for my children or a new husband. I want the man I decided to marry 17 years ago. I want the man that has been so consistent and accepting and adventurous and supportive and loving. I don’t want a replacement. I want the original.

Jim witnessed me giving birth twice. He has seen me depressed, drunk, happy, emotional, sick, energized, impatient, slouchy, sweaty, misinformed, irrational, frustrated, elated and heard me sing. He has seen the core of me. He has accepted me and loved me through it all. And I him. We are supposed to drive cross country in an RV. We are waiting until Brad is old enough to raft the Colorado River in the Grand Canyon. We haven’t gone to Australia yet. We haven’t paid off the house and retired and watched the kids grow into young adults with families of their own.

Time. Time can either be your friend or your enemy. With Alzheimer’s it is both. You don’t want to drag out your loved ones demise to the point that they are years in a home, bedridden and completely unaware of who you are. But you want more time with them and you want time to fulfill your dreams together. What a bitter irony.

 

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)

A New Treatment…

Jim getting fitted for his "helmet" to use in the hyperbaric chamber. Aug. 2013

Jim getting fitted for his “helmet” to use in the hyperbaric chamber. Aug. 2013

Last week Jim started a new treatment. Hyperbaric Oxygen Therapy.

To explain it best, I have copied a description from the Mayo Clinic website:

Hyperbaric oxygen therapy involves breathing pure oxygen in a pressurized room. Hyperbaric oxygen therapy is a well-established treatment for decompression sickness, a hazard of scuba diving. Other conditions treated with hyperbaric oxygen therapy include serious infections, bubbles of air in your blood vessels, and wounds that won’t heal as a result of diabetes or radiation injury.

In a hyperbaric oxygen therapy room, the air pressure is raised up to three times higher than normal air pressure. Under these conditions, your lungs can gather up to three times more oxygen than would be possible breathing pure oxygen at normal air pressure.

Your blood carries this oxygen throughout your body, stimulating the release of substances called growth factors and stem cells, which promote healing.

Jim during the treatment session.

Jim during the treatment session.

 There is no real “proof” anywhere that this treatment will heal Jim of his Alzheimer’s.  But, we have been fortunate that a local healing center, Renova Wellness, heard our story and asked us if we would like to try a new approach. What do we have to lose? As we have been told by every doctor, every article, every news story and by every bit of research we have done, there is NO CURE.
So, Jim has agreed wholeheartedly to try this. He will have to go everyday for long periods of time. Each session is 90 minutes and they suggest starting with 20 days, take a week off, then another 20 days. They have had some patients with dementia that have recovered enough to stop asking the same questions over and over and have stopped repeating themselves. We have not been promised a cure. We have not been told that Jim will go back to his old self. But, we are hoping that these treatments will help stave off the disease, give us more time together as a family and possibly help with his short term memory that seems to be failing more often than not.

The Hyperbaric Chamber.

The Hyperbaric Chamber.

It is really sad how desperate and willing to grasp at anything that gives the slightest hope of some sort of reprieve from the steady decline a family can be. Like so many, we are that desperate. We want Jim to have time with the kids. We want them to have time with him; while he is still him.
I remember quite clearly going through all of the testing when we were first trying to figure out what exactly was wrong with Jim. It got to the point where I was disappointed it wasn’t a stroke, a brain tumor, depression or one of the myriad of things we eventually ruled out. All of those have either a treatment, a definitive diagnosis, a game plan of what to do and very seldom result in a possible 10 year decline of all mental skills associated with being a Dad, a friend, a lover, a husband, or a functioning member of society. Please do not misunderstand me, I do not think having a stroke or brain tumor is a cake walk. I am just relating how desperate and warped your views and desires can become as you slowly start to understand the daunting undertaking you and your family are about to begin.
Jim is still on his medication. He is still exercising. He has stopped reading. I am thinking I should try to find some short stories. Long novels are difficult and he was having to take notes so he could remember what he had read. He just finished his follow up testing at the NIH for the diagnostic study. We are participating in our Walk to End Alzheimer’s. We are gearing up for our family vacation next week….FAMILY CAMP. We are ALL very excited. We go the same week every year….
So for the most part, Jim is still Jim. Except when he isn’t. While we were at the NIH, we ate lunch in their cafeteria. I was in line for pizza and he went over to get a sandwich. I was watching to make sure he found his way and he seemed fine. When I walked over and stood with him as he waited, one of the ladies behind the counter asked him if he would like something. He said he would like a Reuben. The second lady behind the counter looked up and said, “I already helped him.”
Jim replied,”No, I haven’t ordered yet.” She argued back she had helped him. He had already ordered. I asked him if he had ordered a sandwich but just hadn’t gotten it yet. He was adamant he hadn’t been helped yet, but at the same time, I could tell he was a little confused and off.
Sure enough, she pulled his Reuben out of the oven and wrapped it up for him. There were no words said by either of us. I didn’t know what to say, since my heart was again breaking and I was no longer hungry. I have no idea what he was thinking….he almost didn’t seem to really understand and realize what happened. But I wasn’t mad or frustrated with him. It is becoming our new normal.
So, if the hyperbaric chamber can help Jim remember what he has ordered, I’ll take it.  If it will help him recall what positions the kids played in their games and if they got hits and runs and outs, I will take it. If breathing in some pure oxygen will give me a little more time with him, I will take it.
Jim and I were able to enjoy a nice lunch in Bethesda, MD after finishing up at the NIH.

Jim and I were able to enjoy a nice lunch in Bethesda, MD after finishing up at the NIH.

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

Just a quick update

Jim painting Frances' room.

Jim painting Frances’ room.

Jim and I are headed back up to the NIH tonight after I get off work. The kids are away this week so I don’t have to worry about them. Just my Jim and I.

While Frances is gone these past two weeks I wanted to paint her room for her. She has been asking us to do this for a while. She finally picked out the color and I thought this would be a great surprise. Not a good idea on several levels. As I have mentioned previously, I work full time and my job has been pretty busy and demanding lately. I have had several events after hours to attend plus lots of time just following up and catching up. It is what you do when you have a JOB.  Without getting into minute details, I must admit I have been completely frustrated and also completely wiped out emotionally at this ordeal. In hindsight, I should have tried to hire someone. But I really thought that Jim would be able to do this. How hard is it to paint a small bedroom? I ended up painting several nights late into the early morning hours.

Jim has always been super handy. He knows how to take apart things, put them back together and have them running like new. It’s what he did in the Air Force. He can build things and definitely can paint just about anything as well.  I know he can. He knows to wipe down the walls to get them dust free and clear of any possible cobwebs lurking in the corners and above the picture molding. He knows to fill the holes and then sand them before putting any paint on them. He is very aware that you don’t need to put away the drop cloths and paint and brushes until you are done painting the entire room. Who wouldn’t know that you have to put on another coat of paint when you can still see the previous color on the walls? Isn’t it obvious that the white just above the picture molding also needs to be painted when you are painting the molding?

No. All of these simple tasks are not a given when someone has Alzheimer’s Disease. The guilt of expecting too much; the guilt of getting upset and disappointed and being frustrated overwhelms me beyond my abilities to simplify them into words or expressions. I am turning into a person I don’t like and who I don’t recognize. My insides are in a constant state of twists, turns and upheavals and it seems the more I try to control them and settle them and undo the knots, the tighter wound they become. The more emotional I become the more it seems I can not control my emotions.  The stress is starting to show on my face. I know this because I have had several people mention it. I need a break. From life.

My “break” will come. Tonight Jim and I travel to the NIH for the last of his follow up visits. We will have a night away before we pick Frances up from camp. Then we will get Brad back and our lives will resume. And the stresses will begin again.

Jim took his driving test. The center has a sliding scale for costs to help those that can’t afford the full amount. Thank you. JIM PASSED! Yes he did. I was so excited and relieved. I really wasn’t too sure he would. Or what I would do if he didn’t. It was a very thorough exam that was written, verbal and actual driving.

I have noticed that my expectations slightly rose after this great news. I mean, if he can pass a 3 hour test for driving and memory skills, can’t he figure out how to paint? Can’t he realize that he wore that outfit yesterday and it is not suitable to wear today?

For his part, Jim keeps doing his best. He keeps trying hard everyday to please me. He is sad. He knows what is happening. He doesn’t always seem to be aware of his changes, but he knows he isn’t the same guy he was a year ago.

Letting go. I have to let go of my expectations. I think when I do this though I will be giving up a little. I am such a strong fighter in all aspects of my life that it is just gut wrenching to stop expecting Jim to be Jim. Each little step of something he can no longer figure out on his own is a step closer to me losing him and the kids losing him and the world losing him. I don’t want to lose him. I want to fight hard enough to keep him here with me. Even though I know this isn’t going to happen, actually letting go of any hopes of our future together brings me not only to my knees, but makes me feel defeated, lost and terrified. Sometimes I just sit and cry and say, “I can’t do this. I can’t do this.” I don’t have a choice. I HAVE to do this. I can’t walk away. I can’t find a solution. I can’t make it better. Well, maybe I can make it better by releasing my anger, guilt, expectations and fears. I am working on it….

Brad helping paint.

Brad helping paint.

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

Thanks for asking.

 

Bradley sitting on the porch as I am leaving...

Bradley sitting on the porch as I am leaving…

Since there are what seems like a million different stages of Alzheimer’s Disease I want to keep you up to date on about where Jim is in the progression of the disease.  I have someone ask me a couple of times a day, and I honestly haven’t figured out the best reply.  What to say?  “He is maintaining.”  A slow, steady decline that is difficult to see with the naked eye. “He is good.” Compared to what? Someone further along? Not good compared to who he was. “He is doing well considering.” Considering what? That he has Alzheimer’s? Just not the answer I would hope to have in my arsenal.

Don’t get me wrong. I am glad people ask. It is a way of showing they care. They are concerned. They have no clue what else to say. I am just as guilty. I know what an awkward moment it is trying to answer this simple question. Yet I ask this very same question of others in similar situations. It’s just what we do. And it is ok. Keep asking. Eventually I will figure out the best way to answer you honestly and eloquently. Just understand that sometimes I have no idea how to answer you honestly without collapsing into a long soliloquy.

Hmmmm. How is Jim doing? He is freaking fantastic. He gets up every morning. He gets dressed. He feeds the cats and waters the plants. He fixes breakfast for the kids. He writes lists of things to do and does a really good job of following the list. One day a week he will go grocery shopping. (That is a whole other story) One day he will work in the yard (that hedge usually needs something done to it.) One day he will vacuum and clean a bathroom. One day or two days, I have no clue what he does all day. I come home and ask him what he did and he looks at me with a far away glare and says, “I don’t know.”

Now, how am I doing? Good question. Sometimes I think I am doing really well. Then I come home from work and I see that Jim did the bathroom. That is great. I want to put it on the record that I am thankful….BUT…..he will have spent 3 hours (literally) on the bathroom and when I walk in I can tell that the tub isn’t clean, the toilet isn’t clean, the floor isn’t clean and one sink might be. Just so you know, I am really not OCD. I just think that something shouldn’t have hair, dirt and debris on it once it has been “cleaned”. This is the same for vacuuming. And for the yard. (I’ve started to notice lines in the yard where someone ,I won’t name, has missed during mowing.) Dishes that are “done” aren’t really clean. Or put away in the correct place. Last week dirty laundry was put outside  on our picnic table in the basket. Not sure why. I know I need to be so grateful that he is trying so hard and still able to do so much. BUT….I would really like to get rid of the ring starting to build in my tub and I would really like a yard with no weeds. You may think I am expecting too much. I think I am expecting too much. Maybe I am. Jim has said it himself. “All I am good for is dishes and laundry.” How do I keep up the house and keep him feeling like he is doing a great job?  I feel like a dictator in a land that should be socialist. I know I am not alone……

You may ask, “Well, Karen, what are you  doing to help?” Good question. I ask myself that everyday, many times a day. I get up and once or twice a week I leave before Jim and the kids are up. On the days I am still here when they are up I am getting ready while he is fixing breakfast and starting the day. Most days I start a load of laundry or switch out laundry. I add to the grocery list or to Jim’s list for the day. I go over the kids schedules with them and remind them of their chores. All while gathering my work stuff and my chai tea and my banana.  I am usually walking out the door as the kids are eating. It is painful. One of my least favorite things is leaving my children every morning. They both come out on our front porch, no matter the weather, and wave good-bye to me as I drive away. EVERY single day they ask me when I will be home. It tugs at the old heartstrings. But, I drive off to start my day of meetings and appointments and well, my JOB.  Sometimes I am fortunate and can stop by the house for lunch. I can answer questions and help out. Most days I am gone for the entire day. That is when the fun begins. The phone calls from the kids or from Jim. Questions on what was on the grocery list, what the kids can or need to do, letting me know what they are doing, asking when I will be home. There have been times I have been driving down the interstate helping Bradley with his homework while trying to prepare for a meeting. Keep in mind, Jim is there, at home, with Bradley when I am helping with his homework. Also keep in mind that Jim is a MUCH smarter person than I. There have been instances where the kids call to ask me if they can do something and I will ask them where their father is. “He is right here.” “Then why are you calling me and asking me if you can go outside? What did he say?”  “He said he didn’t know, to call you.”

Last week I had a large work event that needed my full attention through most of the afternoon and into the evening. Frances had a softball tournament about 40 minutes away. Brad had baseball practice. I gave specific instructions to Jim to find her a ride and to make sure he knew who it was so he could tell me. During my work event I called Jim to ask how everything was going. “Fine. Bradley is at practice.” “Where is Frances? Did you find her a ride?”  “Yes. The tall lady with dark hair is giving her a ride.” “What? Who? Who is giving her a ride?” So, here I was, trying to keep my composure in the middle of this work environment while completely freaking out on the inside.  I started calling the Moms on the softball team and found out quickly who had Frances and was giving her a ride. But the fact that Jim had no clue other than that description was really unsettling.

When I get home from work, I usually have less than 1/2 an hour to either fix dinner, change, give some orders to Jim and the kids or follow up on some bill or paperwork or appointment before heading back out the door for either softball practice, baseball game, swim meet, work meeting or SOMETHING.

I am usually home for good by 9 or 10 o’clock. At this point, I try to relax (not really), check e-mails, eat, go jogging or walking with a friend or once every 3 weeks watch something on tv.

Maybe I am the quentissential working Mom. I don’t feel like it. I feel like the quintessential loser Mom because I am gone so much. I am so busy. I am always focused on what hasn’t been done and what needs to be done. Where is that Mom I was going to be? The Mom that never yelled and had time for projects and had time for field trips to museums and parks? Wasn’t I going to take the kids to Monticello by now? Weren’t we going to go pick peaches two years ago? Shouldn’t I have re-done the kids’ bedrooms by now?

Yes, on one hand, Jim is fantastic. He is looking good (a little thin for my liking) and he is helping out.

On the other hand, I am so frustrated and lonely and worried.

So, thank you for asking. I think I have answered your question. Now, when I ask you the exact same thing, please  just tell me everything is fantastic. Or tell me the truth so that I will know how to answer the next person that asks 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 (20)