Archive for January, 2014

Ski Trip

Younger Onset Alzheimer's Disease, dementia, skiing

Frances, our new teenager.

We celebrated a spectacular 13th birthday this past weekend. Frances  had requested we go skiing. Skiing. A very expensive hobby. As fate would have it, after a series of articles were published about our family last fall, a kind, giving and very generous stranger contacted us through his bank and “donated” money for us to go away for a weekend as a family. So, I kept the money socked away for a few months and used that to cover the lift tickets, ski rentals, gas and food.  We were also fortunate enough to have a friend lend us a place to stay and so we were able to enjoy a beautiful family mini- vacation full of fun and white powder. Frances had the birthday she was hoping for and we all got respite from the normal daily grind.

Frances has a friend that also loves skiing and her family joined us, as did my parents. So, it was a special time indeed.

Not only was this a fun trip for Frances, but Jim also got to ski again. He loves skiing. He has skied in Europe and different parts of the US. He is a natural athlete and can ski quite well. I, on the other hand, stick to the slopes made for beginners, fall a few times and then I am happy to call it a day and sit by a warm fire.

I thought this would be a good time for Jim and Frances to have some quality Father/Daughter time. And they did. But Jim wasn’t able to coordinate all of the equipment well. He lost the brand new pair of goggles I had just bought him. He literally lost $10 while getting organized in our room (we tore that place apart looking and never could locate it. Where is Nancy Drew when you need her? The Case of the Missing Ten Dollar Bill.) He had a tremendously hard time putting on his hat that also covered his neck and face. He, at one point, lost his ski poles, his skis, his helmet and just wanted to give up. He was crying as we stood there, on the white powder, searching through the crowds of brightly colored outfits for his goggles, his skis, his helmet and his poles. I told him he was going to ski and we would get it all worked out. I found the skis. We got a new helmet and new poles. But he was left to ski with no goggles in below zero temps. And he loved it. He had such a great time. Even better was the next day when our friend that had joined us took Jim and Frances out on the slopes. They ate at the bottom of a slope, next to a lake  for lunch.  She worked with Frances and  helped Jim navigate the trails and the lifts. It saddened me that Jim had to quit early because he had gotten tired and began having a lot of trouble getting on and off the lifts, but wow! What a great friend! I know she wanted nothing more than to ski all day on the slopes and spend the day zig zagging and jumping over the beautiful white stuff. But, she didn’t. She took it upon herself to help. And what a gift she gave me. I was able to relax and not worry about him. I was able to chill out with Brad and my parents and at the same time know he was being looked out for. I hadn’t realized until then how stressful it can be at times. Just trying to keep up with him and his stuff and his schedule and his needs on top of mine and the kids.

I already had been feeling guilty because I had stopped long enough to look at his hands. They were cracked and looked horrible. He hadn’t trimmed his nails and wasn’t putting anything on them to protect them from this harsh winter and they looked painful. A few weeks ago I had seen they were looking rough and had told him to start putting lotion on them each night. He would wash his hands after putting the lotion on and I would tell him to go put some more on. I would explain to him to wash his hands before putting the lotion on. And he would repeat the same scenario night after night. It was almost like a comedy. But with such a hectic life, I hadn’t really checked out the progression. I am so ashamed to admit that I hadn’t noticed how deep the cracks had become and how long his nails had gotten. Jim has always been a stickler for personal hygiene and this is all so foreign to me. Having to keep watch on his personal care seems so evasive and robs him of some privacy. I know this is going to get much worse. But each initial stage of care seems to rob him of himself and robs me of him.

So, we had many rescuers this past weekend. Silent angels who helped make the vacation possible. Good friends that joined in the fun and helped us. The knowledge that my parents were there to help and to be back up parents if need be for the kids was appreciated. Plus, I got to spend a long weekend with them, which I cherish.

I wish everyone going through this difficult journey were able to enjoy a weekend away like we were. It heals the soul. It rejuvenates the spirit. It brings a sense of normalcy to an otherwise abnormal 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 (7)

Younger Onset Alzheimer's, frustrations

Visiting Mount Charleston, NV 1996.

1:43 p.m.  What time do I need to pick Brad up from school today?

1:45 p.m.  Does Brad have Odyssey of the Mind today after school?

1:50 p.m.  I am sorry to bother you. What time do I need to get Brad up from school?

In the past few months, this has become the norm, not the exception. The norm. It is now the exception if Jim remembers something. It almost calls for a celebration.

Since he has started to decline more and more as far as short term memory, more friends and acquaintances have noticed a change. Just tonight someone asked me if his leg was ok because he seemed to be walking different. Yes he is. He is now doing an “old man shuffle” as I call it, most of the time. PJ’s are usually on by the time I get home from work. He says they are comfortable and I have no argument. Yep, pajamas are nice at 5:30 p.m. Wish I could put them on and relax for a night.

I hate Alzheimer’s Disease. I hate the fact I have no control over our destiny. I hate the fact that no matter what I do or how I do it, nothing is going to change. I hate the fact that I lose my temper. I hate the fact that I am so busy that I am seldom around for the kids when they really need me. I am working. I am working. I am working. I always seem to be working. Again, I am so grateful for having a job, but sometimes the 8- 5 grind doesn’t gel with the Alzheimer’s Disease/Kid meltdown/Life agenda. Plus I have a job that requires some nights and some early mornings. When my kids are both crying for me to stay home and telling me they don’t want to be left home with Dad, I am torn. I am torn because I want to stay. I need to work. I want to be there for them.  Yet we have bills and need my paycheck. It isn’t fair to Jim that they feel this way because I know how awesome of a Dad he is. He was. But I can’t. I can’t stay and I have to leave. I am a torn, broken woman. I think my dilemma is similar to that of a stay at home parent. Except my spouse is living with us. And instead of learning from mistakes like children usually do, my spouse is repeating the same annoying stuff. And we are supposed to understand and be patient and carry on like nothing is wrong.

I sometimes see other people who seem to have everything so easy. I know deep down this isn’t really the case, but when life is handing you lemons, it is hard to see how to make lemonade. It is getting harder and harder to keep the REAL Karen alive. The exasperated Karen seems to be pushing her way to the surface and I am trying so hard to not let her out. Now the smallest things become HUGE difficulties to deal with. The cable company screwing up. A birthday party coordination. Just trying to keep up with paying bills and going through the mail becomes tasks that should be congratulated  when done. Yep. I congratulate myself often now for things that were so simple, routine and easy just a year ago. Then if you throw in anything extra, like an oil change, coordinating a play date, a scam artist calling the house, changing any part of the daily schedule; it all becomes a huge undertaking.  Something so simple and easy becomes completely overwhelming, daunting and a burden that is almost insurmountable. It is insane how this happens, but it does.

Frances told me tonight,” Sometimes you seem to get upset with every little thing that isn’t done right or needs to be done. And sometimes you just don’t seem to care. We need to find a happy medium.”  Yes. She is correct. Yes. She is going to be 13 on Saturday. And YES, I am very proud of her. She gets it but that doesn’t mean it is any easier for her. I am trying to find that happy medium. But as I am constantly being pulled in so many different directions while watching Jim observe from the sidelines, I am struggling to get to that place. I know I can. I want to. I am trying. But, it sometimes appears impossible. But nothing is impossible if you are willing to try and want it bad enough.

It makes me so sad. There is no longer any input from Jim. He struggles each day just to follow his list and to follow a conversation. Sometimes he seems to be fine, but those moments are getting rarer and rarer. And that makes me sad. Even though I am aware of what is coming, when these stages hit, knowing what still lies ahead only makes me guilty for not appreciating what he still can do now.

I am a proud woman. I am a proud woman that has to accept help. I am a proud woman that has to accept sympathy and knowing looks and suggestive comments and do it with a smile while being gracious and grateful. Yes. I am grateful. For so much.  So very much. But just because I am grateful doesn’t mean I  cannot be resentful. I am resentful that I am not able to live up to my potential at my job. I am resentful that I am not able to be a better mother. I am resentful I can’t keep my house clean or clutter free. I am resentful that I no longer have a husband in the sense of the word but I am still married. I am resentful that my children live with their father but he cannot be the Dad that he is capable of being. I am resentful that we worked so hard on our marriage for so long and now our relationship is a joke. There is no communication. There is no intimacy. There is no support. There is no acknowledgement of anything sacrificed or done on behalf of anyone. I am just done. Done with it all. But I can’t be. I will get up, fix a meal, clean, work, check homework, drive to practice, work, and sleep. Sleep is my friend. And my enemy. When I sleep too much, I don’t get enough done.

It is a bitter time in my life. I never knew how strong I could be or how strong I would have to be. I am realizing it now.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized and have Comments (12)

Got someone’s back?

Alzheimer's Disease, Early Onset, Friends, Caregiver support, help with caregiving,

Jim and I, Dec 2013.

Have you ever wanted to kill yourself? I have. I have gotten to the point in my life several times where I just didn’t think it was worth it to keep fighting and to keep living.

I was 13. And 14. And 15. Actually, through most of my adolescence I was emotional and unhappy and trying to understand my place in this world.

That being said, I would never kill myself. I have too strong a personality. Plus, I have two parents, a brother, two kids and friends that it would crush, devastate and they would never be the same. I am not that selfish. But I can say there have been times in my life that the only reason I could come up with for wanting to live was thinking about how sad and awful it would be for my Mom and Dad. Sometimes in the continuing circle of life you must endure the part of the circle where you are headed down. The arch of the ring eventually curves up, but not until after you enjoy some downtime. I feel like I am in a HUGE circle, so my downtime seems to be a little longer than normal.

Not too long after Jim got diagnosed, someone gave me the book Still Alice by Lisa Genova to read. I did. And I cried. And I started worrying about Jim taking his own life. I was depressed after reading that book for a solid two weeks. They are now making it into a movie. I probably won’t go see it. Unless I am invited to the World Premiere and have a reason to get out of dodge and dress fancy.

I wanted to share these thoughts with you because I get it. I get that the life of a caregiver, even in the early stages, sucks. Big time. I know there are many caregivers that have thoughts of suicide. But they can’t, because who will take care of their loved one they are stuck taking care of? They think about it and want to. And sometimes they do. Sometimes they also kill the spouse or parent or sibling they are caring for.  There was recently an episode in California where a man with no criminal history killed his wife and sister. One was an invalid and one suffered from dementia. When I read the story I knew. I knew he just couldn’t take it one more day. The police arrested him sitting quietly on a bench at the nursing home where his sister lived.  Read the news article here. I was going to write: Read the full story here, but we all know this isn’t the FULL story.

Until caregivers get more help, these types of instances will continue to happen. Until caregivers are taken care of the same as patients, there will be heart attacks and strokes and depression and an utter lack of fully participating people. I wouldn’t go so far as to say zombies, but the thought did flash through my mind. People not able to contribute to society as they once did or still could. They are overwhelmed, tired, lonely and forlorn. Many times they are financially ruined. Most times they have lost touch with friends, neighbors and have no one to help them. From the moment they wake up until the moment they rest their head on the pillow at night, they are consumed with dementia. They are reminded constantly all day long that the person they are entrusted to care for can no longer take care of themselves and there is no way out. They feel trapped. They feel unloved. They feel isolated and alone. They get to the point where it just doesn’t do any good to cry anymore. They tried that and all it got them was swollen eyes and a headache. The one person they would normally turn to for help or to talk to about having such a problem in their life is more than likely the one that is now causing them such problems. The irony is so bitter, they can taste it in the food, wine, beer, liquor, cigarettes and drugs they ingest each day to make it through to the next. And it continues like this for months. Years. With no help, plan or way to make a change for themselves; depression and bitterness seep in. There is so little time for them to take care of themselves, they gain/loose massive amounts of weight. They age prematurely. They have heart attacks. They have strokes. Their personalities change and their light is whiffed out. Many had careers. They led productive, influential lives. They were the life of the party. Now, they change adult diapers and answer the same questions over and over and pray that it will all go away. It is a nightmare that many live in and few can survive unscathed.

Then the person they have been revolving their whole life around passes away. By now their friends have disappeared, they are no longer working, they are broken and defeated. To add insult to injury they must start new and carry on after paying all of the medical bills and after suffering a loss that has been a long time coming.  The feeling is bittersweet because they are riddled with guilt at the sense of relief that they feel now that they are no longer responsible and consumed with taking care of their loved one with Alzheimer’s. They have actually been looking forward to this day and they know how selfish and wrong and bad that is. But they were so overwhelmed, those thoughts crept in before they could stop them.

Post Traumatic Stress Syndrome isn’t just for victims of quick, violent crimes. I think that term could be used for caregivers that have endured a living Hell for years and then are set free with little help or support or idea of what in the world they are going to do now.

I am here to tell you what to do. Pick yourself up and smile. Into the mirror. Take the 5 minutes you haven’t had in years and just smile into the mirror. First, forgive yourself. Forgive yourself for all of the times you lost your patience. Forgive yourself for surviving. Forgive yourself for feeling relief. Then congratulate yourself for being the strong, kind, loving person you are. Only those types of people can make it through. You did. You deserve a vacation. You deserve a break. You are strong. You are brave. You survived. You might have had doubts and you might think you could have done better, but you did the best that you could, when you could, however you could. Love yourself now. It is time to move on. It is time to embrace the world and re-introduce yourself.

I am no fool. I know my limits. That doesn’t mean I stay within them. I may be no fool but I am sometimes foolish. I push myself. I am hard on myself. I expect a lot of myself. These traits will either keep me going or cause me to end up a statistic. I am not sure which.

Friends are what keep pulling me out of the dark waters I sometimes slip into. My message to someone reading this particular document who isn’t a caregiver, but possibly a friend, neighbor or co-worker to someone who is: HELP THEM. DON’T JUST SAY TO THEM, “LET ME KNOW IF YOU NEED ANYTHING.” They do. I promise you, they do. They are having a hard time accepting help. They are proud. They are lost. They don’t know where to start. Whatever you can offer, whenever you can offer, is a huge help. It doesn’t have to be much. Really. It could be as simple as having lunch or coffee or dropping by to say “hi.”. Are you able to take their loved one on an errand or sit with them for a while? It could be helping with yardwork or just reminding them when something is going on. I know for me personally, I no longer have the memory I used to. It is almost like I have Alzheimer’s too. I used to remember my schedule so well but now I forget so much it is embarrassing. Gasp. Like it would be to have Alzheimer’s and constantly be struggling to remember.  I am so very, very fortunate. I have friends that ask me to lunch. Bring me dinners on occasion. Invite me to gatherings. Help with the kids. Forgive my new personality that takes over sometimes when I least expect it and I am pretty sure when they least expect it. Without my friends, I really do not think I would be a very nice person. I don’t think I would be a very good Mom and I am pretty sure I wouldn’t’ be a very good spouse to Jim. If you are reading this and you have the opportunity to help someone who is a caregiver, do it. You have absolutely no idea of the life you are saving, but you are. They will not be able to put into words how grateful they are, but they are. Even if they tell you they don’t need help. Even if they tell you they are fine. Even if they seem fine. They aren’t. They are scared. They are overwhelmed. They are depressed as Hell. They need you.

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

Funding Anyone?

Alzheimer's funding, alzheimer's disease

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

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

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

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

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

They are all worthy causes.

alzheimer's disease, funding for research

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

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

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

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

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

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

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

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

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

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

S.T.O.P.

Once-She-Stopped-Rushing-Through-Life

Earlier this week I got home from work. I needed to start dinner, then pick Frances up from volleyball tryouts, swing back by the house to wolf down some of said dinner while going over Brad’s homework and what he needs to do while I am taking Frances to softball practice.  I also took a load of laundry out of the washer and put in the dryer. During all of this commotion, I am yelling out inquiries to whomever is close by: Has the dog been walked? Has he been fed? Did anyone feed the cats? Did Brad practice his piano? Where is his agenda for me to sign before I leave?

Suddenly. Things stop. Brad is upset. His book bag and its’ contents are strewn across the living room floor. I can tell he is upset but my initial 3 times of asking him in 3 different ways what is bothering him are met with a brick wall.

I squeeze out some time to take him alone into the living room and sit down calmly to talk. I am feeling irritated and rushed. It was a long, very cold day at work and I want to try to change before heading back out the door. He tells me he has a quick temper (pretty impressive for a 9 year old and I wonder if that is something someone else has told him). He and I continue along this path for a few more minutes and then his flood gates can no longer hold back the tears. The pure, clear, heartbreaking tears streaming down his innocent, beautiful, soft face. I hold him close. But I am not crying with him. I have come to realize that I have already been mourning Jim so long, I no longer am able to cry each and every time. (I still have moments) But I am shattered inside. I can only hug him and wipe those tears away. I cannot change what is happening to our family or his Dad. I am powerless against something a million times stronger than any of us.

I learn that Brad had asked Jim to fix some mac-n-cheese for a snack when they got home from school. Jim got out the BOXED version. Brad went to do whatever it was he was doing. When Brad came back into the kitchen, Jim had evidently put away the BOXED kind and instead had started up the oven and was putting in the FROZEN kind. When you are 9 and you want and expect the BOXED kind of mac-n-cheese, the FROZEN kind will just not do.

So, I sat and hugged him and we discussed how disappointing it must have been because he had in his mind what kind of mac-n-cheese he was getting and was looking forward to that specific snack. A life lesson for us both began to unfold.  There have been numerous accounts of similar situations in our families’ history where I would have lost it. I would have been rushed, needing to move on to the next thing and I wouldn’t have found the time to sit quietly with him and work through the whole mac-n-cheese drama. I would have never figured out what was at the root of his anger and attitude. An opportunity would have come and gone and I would have never known the difference.  This episode would be melted into a conglomeration of childhood tantrums and reasons to throw more discipline his way. After all, does it really matter  what kind of freakin’ food we are eating when Jim is DYING? Does it really matter, as long as you get some form of mac-n-cheese? Shouldn’t we just be grateful that Jim can still fix some kind of food at all and not burn the house down? Maybe, but to a 9 year old little boy, that was what was important and what was causing frustration and anger. But the REAL anger was that his father got confused. His father forgot what kind he was making and ended up with a version that wasn’t originally agreed upon. For this 9 year old little boy, the switching of the mac-n-cheese was just one more sign that his Dad is slipping and things are changing and life isn’t fair. Although he is only 9, he is so wise and gets it. He gets what is happening and is sad and scared and helpless. Like all of us.

Lost in the shuffle is Jim. Standing by, shuffling from room to room. Understanding that Brad is upset. Understanding that he did something “wrong” to cause the debacle. But not included in the discussion with Brad or me and not given a hug of understanding. I realize this only later and it puts a knot in my gut. I must remember next time.

Fifteen minutes later, I was driving Frances to practice, feeling like I had accomplished something. I had grown as a Mom. I had carved out time I really didn’t have to do the right thing for my son. For my precious, smart, sensitive son.  I realized how good it felt in contrast to my normal rampages of  rushing, misunderstanding and eventual guilt. It is so easy to glide quickly over disruptions in life. But the real life is in stopping and learning from those disruptions. With Alzheimer’s, you are given many chances to learn, re-learn and become an expert on disruptions in life.

Now I can only hope that the next time a similar situation arises, I will be able to stop, think, react appropriately and feel the wonders of motherhood again.

Alzheimer's Disease, parenting, patience, love, understanding

Brad and Duke. Dec 2013.

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)

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)