Inquiries answered.

Dealing with Alzheimer's and holidays.

Jim and I New Year’s Eve, 2013.

Happy 2014! I want to start off the new year by answering a few questions that have been asked (some repeatedly) since I started this blog last Feb.

I am working on a new post as well and have decided that I will share even more and if possible, provide more insight into the nitty gritty of living with Younger Onset Alzheimer’s Disease. It is hard sometimes to open up about something so personal, but the overwhelming response of love, support and camaraderie is healing and soothing to my soul.

For now, here are some questions and answers for you.

As always, thank you so much for all of your love, support, encouragement and feedback. I have found this journey to be a bit more survivable because of all of your kindness.

How did you first know something was wrong with Jim? What was it like before he was diagnosed?

About 6 or 7 years ago, we started having a lot of problems in our marriage. We went to a marriage counselor and it was very frustrating. I would go in bitching and complaining about Jim, he would agree with everything I said while promising to do better and the next session would repeat itself all over again. I felt very guilty for constantly being upset with him and needing to correct him. I was told I was too hard on him and expected too much. (not by Jim) I couldn’t understand why he was at times saying things that just didn’t make sense; otherwise seeming completely normal and like there was nothing amiss. There are a couple of examples I have used, the easiest one relates a time we were driving down a road under construction and one of the kids asked how they determine the speed limit. Jim shot back quickly “by the number of potholes.” An argument ensued and it was just one of many like this that would happen sporadically over a couple of years. At that time, Jim was not forgetting anything. He wasn’t really losing anything. He was still pretty much himself, but at times not. I was really contemplating leaving him because I was just so unhappy and so was he. We couldn’t afford to separate and soon enough his “episodes” became more noticeable and more common. I knew something was wrong with him after he got confused about a bridge in Georgia. I honestly believe the reason Jim was able to be diagnosed as early as he was has a lot to do with the fact that I am a type A personality, that I knew him very well and that I am so in tune with how he normally would be. It wasn’t in my personality to just let things slide. I also believe that at times it is good that we learned so early, but I also think it will make our living Hell seem that much longer.

I wrote my first post about this very topic. Click here to read that essay.

Where is Jim in the progression of the disease?

This is a tricky one to answer for me. I will tell you that he originally was diagnosed with Mild Cognitive Impairment with the likelihood of developing Younger Onset AD because of the history in his family. After our follow up visits to the NIH this past summer, we received confirmation that Jim is now diagnosed in the Early Stages of Alzheimer’s Disease. His short term memory is very bad. He is forgetting names, conversations, what he just did (or didn’t do) and little nuances like whether or not he should take a shower or shave. He is not able to multi task at all. He is still driving, but only in places he is familiar with (we have had him tested for this and have gotten two different ok’s). He no longer seems to be able to relate to things going on; seeming aloof or indifferent. He never asks about finances or kids schooling or my work. He is able to help with dishes, the laundry, math homework and other easy chores around the house. He gets confused pretty easily and I have noticed his beautiful handwriting is no more. It is slowly turning into shaky, hard to read verbage. He keeps lots and lots of notes to himself to remember what to do and I think at times what not to do. He is losing many things (sets of keys, passport, license) He has kept his sense of humor, his smile and a fantastic attitude. He plays tennis, jogs and walks our new family member, Duke. He tries hard to maintain his core self and to remain a steadfast partner to me and father to Frances and Brad. I think he does an exceptional job. So much stronger and better than I would ever hope to be in the same situation. Many times someone will meet him for the first time and carry on a brief conversation with him and have no idea that he is suffering from such a cruel disease.

How are the kids handling all of this?

This is extremely personal and I feel like it would be their place to share, not mine. Although they are both aware of my blog, Frances reads it on occasion, but it seems to me that this is something for them to answer. I will say I have taken them both to a counselor. I try to remain open about what is happening to our family. I try to include them as much as they want in events and discussing how Jim is doing. I will tell you that it is very, very difficult to watch them get frustrated with their father and then see the regret and the guilt that soon follows (just like I often go through). They are both extremely bright, loving and active kids. Jim and I really just couldn’t be any prouder.

Does Jim read the blog or even know about the blog?

Yes, Jim knows about the blog. We had very long, heart to heart discussions before I even started. He started reading it once or twice and it was very difficult for him. I don’t believe he has read it since then.  He has been 100% supportive 100% of the time. Not once has he asked me to stop or to not share something. He trusts me  and wants our situation to help others. It is very important to him to have a change come about not for him, but for our children.

Will I write a book?

I honestly had never considered this until I had many people ask me. I am pondering and contemplating and deciding. I will keep you posted. I really am not a writer by trade in the least bit.

How do I manage financially?

Well, I work full time. Jim receives a retirement from the Air Force and he receives Social Security Disability. Plus, we have been EXTREMELY blessed with help with dinners, gift cards, monetary donations and help in many ways. Without the help we have received, I am not sure we would have made it this far without losing our home or car or going hungry. Ok, I don’t think my parents or closest friends will let us go hungry. But, you get the idea. It is very tough and I know it is only going to get tougher when we need someone to stay with Jim during the day or full time.   It seems when I am desolate and down to our last few dollars, miracles happen. I able unable to explain it any different.

What is my plan? How do I plan on making a difference?

I will continue to advocate with our policy makers and I will continue to share our story. I have a dream though. I would like to start our own Foundation. I would like to work full time on helping other caregivers. I have a plan, but I just don’t have the time or resources yet. I am working on it. It just isn’t happening as fast as I would like, but I am an impatient person. Right now I struggle with my work demands and hours needed elsewhere. I am acutely aware of how this is changing and how much it is causing me stress, lack of sleep and unhappiness. In reality I need to work. For not only financial reasons, but for my sanity and to make me have a life outside of my own, tiny, self-centered world.

How do I manage?

I am not sure I feel like I do. I often wonder how I am going to survive this journey. I wonder if I will survive the next round of declines and financial decisions and children issues and I am not sure I can. But, I live another day. I focus on today. I focus on what I can do today that I couldn’t do yesterday and I can’t do tomorrow. I can tell you that my parents and my friends have buoyed me above my fray and kept me from falling into an abyss of darkness I wouldn’t be able to return from.  I just do the best I can while I can. I constantly have faith that something better is just around the bend. There are times that I waiver from this belief and it is at these times that I am at my lowest. I struggle to pull myself out of any desolute and despair I feel and try to re-focus on what I can do now. What is in my control? What isn’t in my control? Being a Mom. Being a friend. Being a wife to a man that would be so terrified to know the anguish and stress he has caused his family and will cause his family.

Do I make money off my blog?

No.

Do we attend a support group?

Yes. I have connected and bonded with several other women who struggle with the same frustrations I do. Jim meets at the same time with others afflicted just as he is and they all seem to be about at the same stage of the game. We meet once a month and I am the youngest and the only one with children at home. It is coordinated through the Alzheimer’s Association and utilizes volunteers. I look forward to our gatherings and I feel a kindred spirit between us.

Has Jim tried coconut oil, fish oil or any other remedies?

Yes, yes and yes. If it has been published and has been regarded as a possible help with his symptoms, we have tried it.  But I do thank you for the continued sharing of such articles and information. We even tried the hyperbaric chamber.

I hope I have answered your questions and I thank you again for reading my blog, sharing your stories and sending me so many positive thoughts and well wishes (and advice).

May 2014 bring us all closer to the one thing that will bring us true happiness. A cure for Alzheimer’s Disease. 

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

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)

Happy Thanksgiving Week

Thankful-PrintableI am so thankful for so many things. During a time in my life when I could just as easily crawl into a hole, wallow in self-pity or let the anger than sometimes comes knocking take over, I struggle to stay focused on the good things that surround me daily. Each year during this time, there are lists upon lists of all the things much more articulate and witty people are thankful for and I usually agree with 99% of what they say. Don’t get me wrong, I am thankful I have a roof over my head, food on my table and health in my body. But those are givens….

My thanks come straight from my heart. There are days I really don’t think I can keep going or that I feel like I am slipping more than I am holding on and some miracle comes into my life to help me get a better grip and to regain a hold on my world.

I start with being thankful for my children. They are what motivates me, inspires me and keeps me smiling. I could write volumes about all they do that makes me proud and thankful, but for now I will just leave it at this.

I am thankful that I have Jim as my husband. He has been the most wonderful man, father, friend and each day he continues to lead our family by example. He shows us all how to put our big pants on, live each day as it comes and do the best you can. He has no expectations and so he is never disappointed. That is all any of us can ask or hope for, no matter what our situation.

I am thankful for my parents and my brother. Without them I just don’t think I would have made it this far. Unconditional love has surrounded me my whole life and they are the reason. I could also write volumes here, but I will spare you (and them).

I am thankful through and through for the people in my life who have made a decision to be in my life, not because they are forced to by blood or marriage. My friends. I am so very fortunate. I have friends in the best possible way….people who aren’t an intermingled clique, but who come in and out of my life as if on cue and for the right reasons. People I met when Frances was taking dance, people I met in 4th grade, people I met when we lived in Las Vegas, when I was in Bermuda, in college, in high school, friends I have recently had the good fortune to find, other parents from the kids’ school,  past and present co-workers, parents from softball and baseball….there are so many. And they understand I am changing. They understand that I am under stress and sometimes not myself. They understand that I sometimes talk too loud, drink too much, stay too long and get too sensitive and they keep me around anyway. They keep welcoming me and I seldom reciprocate and they understand and continue to include me in the fun anyway. I am thankful I have people surrounding me that are smarter than I and are not afraid to share their opinions, thoughts and advice. I am so eternally grateful and forever in debt.

I am thankful for the love and caring that surrounds me day in and day out. Without the small acts of kindness that are bestowed upon our family, I can guarantee you I would not be the person I am today. I wouldn’t be able to write this blog. I probably would have lost my job and my home and at some point, my kids. I just don’t feel like I am strong enough to do all I am capable of without my support system. There are some that I count on almost daily, some weekly and some just a few times a year. It is a marvel really. All of the help and support our family receives is really nothing short of a miracle.

My REAL thanks go to people I don’t know. I thank wholeheartedly the researchers that work so hard to find a cure for Alzheimer’s Disease. I can only imagine how frustrating it must be to go to work everyday and work on something that has no solution. Thank you from someone that thinks of you every day and is pulling for you to one day, come to work and never be needed again.

I thank my fellow advocates. Thank you for not giving up. Thank you for sharing your stories and for fighting when there doesn’t seem hope.

Thank you to the other caregivers and care partners that are getting up each day and setting such great examples of how to selflessly give when the person you are sacrificing for doesn’t seem to care if you even exist. THANK YOU!

Thank you to all of those afflicted with some form of dementia that speak out and share your story. Thank you for participating in research studies. Thank you for fighting and doing the best you can each day even though you are scared and frightened. Thank you to those that have paved the path for a better understanding of what we are going through.

Thank you to those that donate time, money and energy to finding a cure to this horrible disease that has taken over my life and so many others’ lives. Thank you for being so generous and for believing that one day, we will all feel a sense of accomplishment. We will feel we were part of the solution that has been found. This blog, our story and our advocacy will become obsolete. Thank you. Thank you. Thank you.

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

Happy Halloween

Halloween, 2008

Halloween, 2008

Halloween. Our kids LOVE Halloween. They love to dress up. They love to get candy not normally allowed the rest of the year. They love decorating. They love being part of all the festivities in our neighborhood (we usually have over 300 kids stop by for candy) and they love going to pick out pumpkins and getting lost in a corn maze. Truth be told, I love it too. Only in the past 7 or so years have I fully embraced how fun it can be to put on a wig, crazy outfit and cut loose. Becoming someone else for a night is quite freeing and invigorating.

This year has been so hectic and busy, I have failed them. I didn’t find the time to take them to the pumpkin patch, as we have done every year.

I know I shouldn’t feel guilty. The main reason we didn’t have time was due to their schedules, but there is still a part of me that knows I could have figured out a time if we had rushed or moved things around or made more of an effort.

2011

2011

I thought I was in the clear.  I had fleetingly thought of trying to work it into our schedules, but had quickly forgotten. Then last night they both asked me when we were going to go get a pumpkin and carve it. Frances was clearly disappointed there would be no adventure through the fields of dusty, brown stalks and I realized they had been counting on me to keep up the tradition.

So, I sit, contemplating what are important things to them as children and what is something worth skipping? How to tell before it is too late? We have traditions with just about every holiday. As Jim progresses, life gets busier, they grow older while  becoming more independent, which traditions will stick and which will only be recalled when we peruse through old photographs?

Halloween 2008

Halloween 2007

I am realizing that I put so much pressure on myself to keep our family as it was, or really how I envision in my mind it should be, I miss opportunities to keep moving forward and organically grow as a unit. I need to stop fighting whatever is going to happen. Much harder to do than to say.

Many well intentioned people tell me how sad our situation is and how sorry they are for us. That is very nice and I say the same things when the tables are turned and I am speaking with a friend who is going through a rough time. It is just what we say. But I don’t feel like I live a sad life. I have a beautiful family with two healthy, loving, smart children. I still have both of my parents and my grandmother with me. I have a husband that loves me and would do anything he could to keep me happy. I have a job. I have a home. I have good friends, acquaintances and people all over that care about my family. I am blessed with so much.

Yes, there is a part of my life that completely, utterly sucks. But it is one part of my life I have no control over. How I handle Jim’s progression and the oncoming dilemmas will determine if I can remain happy overall. If I am able to compartmentalize the different areas of my life, I am thinking I can remain positive, strong and content.

Halloween, 2009

Halloween, 2010

So our family will celebrate Halloween and we will not have jack-o-lanterns this year. We have costumes, we put up a few decorations and we have a whole neighborhood to have fun with. That is what Frances and Brad will remember and that is what makes memories.  I must focus on what I can change, not trying to figure out a way to change things beyond my control.

Getting ready to hit the corn maze, 2011.

Getting ready to hit the corn maze, 2011.

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)

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)

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)

D.C. Success

Frances and Brad at the Capitol, July 2013.

Frances and Brad at the Capitol, July 2013.

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

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

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

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

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

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

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

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

Rep. Rigell and Brad, July 2013.

Rep. Rigell and Brad, July 2013.

 

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

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

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

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

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

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

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

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

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

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

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

Who wants to play a game?

Frances with Blue Crab at a camp in 2011.

Frances with Blue Crab at a camp in 2011.

Our family loves playing games. We play board games, card games, sports games, video games. It seems it really doesn’t matter, as long as the game is some form of competition.

Last night it was pouring rain so all other activities were cancelled. I seized the opportunity to stay put at home and actually fix a nice meal and hang out as a family. By 7:30 we were all trying to figure out what to do (we don’t watch much tv). The kids suggested we play a game, so I sent them off to find one, which they quickly did. Monopoly Deal. We have played this game several times, but as usual, the kids understand and know the game much better than either Jim or myself. No problem. They quickly re-capped the rules for us and we were off to the races. Well. 3 of us were.

This became another one of our much more frequent “ah-ha” moments. Have I mentioned lately that I don’t like these “ah-ha” moments very much? Have I mentioned what a smart, insightful person Jim is/was? Yes, I know I have. But it doesn’t stop these moments from just being raw, head spinning, throat catching and worst of all, real.

As we were playing the game, I soon realized Jim was a little confused and unsure of what he was doing. He is very adept at staying under the radar so it isn’t quite obvious that he is not completely comprehending what is going on around him. The man has skills.

So, during one of his turns, when he just seemed a little out of sorts, I offered to look at his hand. Wouldn’t you know, I played the correct cards for him, which quickly put him in the lead and when his turned rolled around again, it was he who won?

At first, when I played the card that showed all of us the way the game was turning, Brad and Frances quickly were complaining that I was helping him. ONE look from Mama bear and they fell silent. Then, magic happened. They seemed to follow my lead and started getting excited that Daddy was winning and that he beat us. What a great job he did! The mood shifted, everyone was happy for Daddy and it was soon time for bed.

Brad goofing around, April 2010.

Brad goofing around, April 2010.

Another moment that transitions our family. Another proud parenting moment. Another devastating realization.

So, as the saying goes,”you take the good with the bad.” Yes, we have good all around us. Our friends. Our family. Our home. Each other. There are times I have to look really hard to see these good things, but eventually, it finds me. And I realize it has been there all along. I just have to keep my eyes open to find it.

Actually, every time I look at Frances or Brad I see the good in my life. I see the good that I am doing. I see my reason for living and for trying my best to become the person I am meant to be. When I stop and think about Jim not being able to tag along for the ride of watching them grow and become the people they are meant to be, it just strips my soul. We are blessed. In so many ways. Yet at the same time we are cursed. What a wicked world we live in. To be blessed and cursed all in the same breath.

Tomorrow brings more games. Softball games. Baseball practice. And the trickiest game of all: Life.

 

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

Decisions, Decisions, Decisions

 

Our 4th of July, 2013. Thank you Mr. Poole for the wonderful family photo (again).

Our 4th of July, 2013. Thank you Mr. Poole for the wonderful family photo (again).

I have a dream husband.  Really.  I know so many women complain about their husbands controlling the remote or not letting them drive or not asking for “permission” to go out with the guys.  So many men are determined to be in charge of what is for dinner and what the family does on weekends (or doesn’t do in some cases).

I also hear complaints from women whose husbands have Alzheimer’s Disease just like Jim. Their husbands are angry. Their husbands won’t admit anything is wrong with them and deny any problems when visiting the doctor.

I am fortunate. Even while fighting a disease that is taking over his mind, my Jim is still an amazing husband, father and not following the typical husband line.

My personality is a very strong one.  Even though I can be insecure and at times indecisive, I am also very loud and straightforward.  Jim has always been a great match for me.  Let me have my way until he didn’t.  What I mean is, he got the big picture.  He understood those cutesy sayings you read on Facebook and Instagram.

“If you don’t care and it isn’t important, let it go”.  If he didn’t care what he ate for dinner, he let me choose whatever I wanted.  If he didn’t care what he watched on tv, he let me choose.  Of course one of the things he always said he married me for was the fact I liked pizza, beer and football.  That always helped with the decision on what we were watching and eating on Sunday’s.

If something really mattered to him he would let me know.  Or I could ask him and with enough prodding, he would decide.  Every once in a while this would annoy me and I would tell him I wanted him to make more decisions and speak up more.  I wanted to know what he thought and how he felt about things.  And he would.

Flash forward 16 years.  Alzheimer’s has released a fog over Jim’s mind.  A fog that lies thick on the cortex of the brain that determines what you really want to do or how you feel or what will make you emotionally involved in something.  There are glimpses of the fog lifting every few weeks, but for the most part, the fog rolls around and around and Jim doesn’t seem to notice or mind, no matter how many times I ask him to blow the fog away.

Almost a year ago I decided we needed to get rid of our smallish SUV, get back to a minivan and lower our monthly payment.  Please notice I said “I decided”.  That is right.  Me.  I did the research, I contacted every single dealership in our area. I went for a test drive by myself (twice). I determined the make, year, model, color and add -ons we got.  All while I was working full time.   I was also planning our annual vacation to family camp and keeping up with the kids schedules. I would be so happy if I never had to purchase another vehicle again.  Ever. I already have 28,000 miles on that van. I basically work out of it. It is my office. And the kids’ taxi.

Now on one hand, many people in this world would be ecstatic to be the one making the decision.  But I also know there are those out there that will understand and totally get where I am coming from.  You get married to have a life partner.   A partner in decisions.  The other side of the equation.  Should we get this one or that one?  Should we do it now or later?  Should we get blue, black, white, tan or red?  Or should we just keep the vehicle we have since we will have it paid off in a year?  No, the payments are too much, the warranty is within weeks of being gone, it takes premium gas which is way too expensive (keep in mind the amount of miles I drive), the tires are expensive….well you get the idea, right?  But the flip side of the coin conversations were between me, myself and I.  I would say these words out loud and Jim would just agree with what I wanted or sit quietly.  He was fine with whatever I wanted.

My chest literally is constricting now as I think of the loneliness and emptiness I feel focusing on Jim’s lack of any involvement in not only our day to day decisions but the major ones as well.

Financial decisions.  Disciplining the kids.  Large and small purchases.  Gifts for family and friends.  Birthdays.  Christmas.  Home repairs. Bill paying.  Every single decision comes from my mind.

Yes, there are those of you that would cheer this way of life.  Until you got your wish.  Until you realized the weight of the world was on your shoulders and it was you that had to forge ahead a path with the right choice.  If you make the wrong decision, it may keep your kids from being able to take music lessons or you may lose the house or it may cause you to have to dip into the savings that you have worked so hard to build up to its current measly level.  You have to figure out a way to pay for home care for Jim  (at some point) AND work full time AND take care of the kids AND keep up the house AND keep up with bills and schedules AND figuring out if there are bagels left for breakfast. You would rejoice at the idea of being in charge and determining your own fate, until you do it day after day and week after week and that grows into months and years.  Suddenly, the very last thing you want to do is make a decision.  OF ANY KIND.  You don’t want to decide where to go out to eat.  You don’t want to decide which cable company to use, or if you should even still have cable.  You want someone else to take over your mind and pick out what to wear, which load of laundry to wash, what is for dinner, what tv show we will watch(when we actually sit down to watch it)….. I could keep writing this for hours.  Well, maybe not hours, but you get the picture.

Yes, I am one lucky woman.  I have a man that lets me decide my family’s activities and path ahead.  I look forward to the day that everytime I yell “heads” the coin lands on tails and it isn’t my decision anymore.

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)

Mrs. G, Break down your wall…

Jim getting breakfast at a diner before our first day at the NIH.

Jim getting breakfast at a diner before our first day at the NIH.

I want to tell you what our NIH visit was like. To put the experience; the stress of waiting, the drive up and back, the silence, the testing that shows progression, the knowledge we are participating in something that will help (hopefully) many others…..there are many more emotions and thoughts to express than I can possibly convey. I wish I could somehow share with you the FEELINGS of visiting the NIH.

Security at the NIH.

Security at the NIH.

When you first step onto the CAMPUS of the NIH, it is a little intimidating. If you have ever been to a college campus, that is what it is like. But behind a guarded fence. Where you must first pass through inspection. An inspection that is more thorough than airport security. Then you find your building. And it is LARGE. Larger than most college campus buildings and so confusing that you will get lost. Many times. No matter how often you return. And this building has two gift shops and a book store and a barber shop. And a grand piano in the grand lobby. And two cafeterias. And valet parking (you must get validated.) And a coffee shop. And MANY banks of elevators.

But, no matter how grand the piano or the cafeterias or the lobby, you are still in a waiting room. Sitting in an uncomfortable chair. Watching a TV show you would normally not be watching. Eyeing others that are walking past you; wondering what they are there for as they are probably wondering the same about you. All the magazines have been thoroughly read. You have gazed upon the magnificent artwork and spied the beautiful fish tank. But none of these things keeps you from focusing on the reason you have driven many hours and organized childcare (THANK YOU AGAIN) and put yourself in this place of waiting.

Building 10 at the NIH.

Building 10 at the NIH.

Our doctor at the NIH is wonderful. He listens. He talks. He listens. He talks. It is a great experience on so many levels. If our country’s healthcare could follow the pattern I see when we are there, well, let’s just say many people would still be around and the complaints would fall drastically.

The tests Jim participated in were the exact same ones he did 2 years ago. This particular study is looking at inflamation in the brain of Alzheimer’s patients.This will allow them to see the changes that have taken place. In my mind, Jim has declined drastically. There are major differences and it is all much more noticeable. Our doctor told me there were some minor changes. I mean, 2 years ago he was still working full time. Two years ago he was only showing symptoms every couple of days. Now it is daily. Hourly really. Hmmm. How is THAT possible. I know he,(the doctor) sees much worse. I know much worse is coming our way. Believe me. I live, breathe, sleep, eat and dream of it. But I haven’t been able to plan effectively  for it.

Jim ready for his PIB test.

Jim ready for his PIB test.

So, Jim was scanned. He was poked. He was measured. He was tested. And he will continue the tests in August when we return to finish this round of the study. Then we will get some results.

In the meantime, I need to make a MAJOR decision on his driving. I have decided to relieve myself of some of that burden by having him tested by an organization that does such things. It will cost $400, but I suppose it would cost much more in the long run if I didn’t and something happened. I don’t want to make that decision all by myself. And I don’t have $400 to have him tested monthly. I am starting to understand how people lose everything when this disease happens to them. Financially we are just beginning and I can already see where we are headed. And it ain’t pretty.

Jim had a major decline when he lost his job. Then his brother died from Alzheimer’s Disease (the same week) and he had an even bigger decline. Then 3 months later his Dad passed away (from cancer) and there was another decline. I know when I tell him he shouldn’t drive anymore there will be another decline. And our family life will be turned upside down in so many ways. I think all of this will become even more real. For me. And for the kids. I know it is coming. Jim knows it is coming. I am so grateful for his positive attitude and his lack of anger and his natural kindness. Sometimes I wonder if it makes it even harder.

I am so sad. I am so, so sad. I have finally realized through our trip to Bethesda that I have distanced myself from Jim. I have pulled away trying to protect myself. My natural inclination when I am hurting is to pull away; to find other things to concentrate on and to put a wall up. When we were alone for two whole days, focusing not on baseball games or sightseeing, but on Jim and his health, I realized I am scared. I am lonely. I am mad. I am pulling away. I am trying to move forward while being held back and being held back is what is propelling me forward. I think Jim feels the same way. I don’t think he has put a wall up.I don’t think he is capable.  I think he is scared. I think he is sad. So sad. He loves me and he loves Frances and Brad more than anything. He is absolutely besieged with sadness at the thought of losing us…..or us losing him. This whole crappy story is just one sad emotion after another. I can not live like this for years and years. I can not raise my children in this kind of sadness for years and years. I will not break my spirit or my soul to this disease and this utter sadness. I WILL FIND A WAY TO WIN. I will raise money and awareness. I will speak when I am asked to speak. I will write when I can. I will give interviews whenever I am summoned. I will do whatever I can to give the NIH more money; to bring awareness to the masses; to give hope and spirit to those that are fighting the same battle. It is not easy. Honestly, it is sucking me dry sometimes. But I am a very STRONG and DETERMINED woman. I have found my calling. I have found my true purpose on this Earth.

Date night in Bethesda, Maryland.

Date night in Bethesda, Maryland.

We will return to the NIH in August. We will listen to the results. We will keep moving forward. We will cling to each other and we will gather the wagons and fight until the end. It is what we are wired to do. There is no alternative. I am so grateful that there are researchers that literally are working around the clock to help us find a cure. I am not a scientist in any way, shape or form. I wish I was. I cannot contribute that way. What I can do is share our story and help the scientists get funding and get support to continue the long hours they have already dedicated to this cause. I admire and I thank them. I thank you for reading. I thank my parents for listening. And my friends for helping and volunteering. It really does take a village.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (8)