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)

10 Responses to “Inquiries answered.”

  1. melodyweatherman says:

    Does he have a special diet? Have you considered taking him off wheat and gluten?

  2. Mary says:

    We are living very similar lives, Karen. My heart goes out to you and your family.

  3. Connie Howard says:

    I am a little further along on the journey and identify with all you have and are going through. Glenn is in need of full time care which is mostly me. I am at the point where I need help for myself so I am getting extra care. The financial responsibilites cause me the most stress as their is no assistance because of his age. Care is an out of pocket expense. His behavoir is like that of a two year old. He makes a lot of noises with his mouth. Will laugh at inappropriate times, isn’t familiar with his surroundings, says he doesn’t feel well frequently and wants to go home, doesn’t drive, needs his food cut up in small pieces to eat, needs to be showered and help with his bygience, needs help dressing, watches DVD movies alot, loves music, repeats what others say. He IS phsycially OK, and doesn’t have any physical ailments. He walks and rides a bike, goes with me on errands and knows who we are. My heart and prayers go out to all of us dealing with Early Onset Alzheimer’s Disease.

  4. Elaine Ohm says:

    Thank you for the update. It’s helping me with the never ending litigation that keeps on continuing in AZ with his children….

  5. Maureen d. Connolly says:

    Wow Karen you made my day!!!! What an absolutely perfect blog to start the New Year! I don’t care if I ever meet you, I know you! You are my kindred spirit because right now, I haven’t done the support group thing yet. I was afraid to know what lies ahead. Some days I just believe my hubby will close his eyes and go to sleep one day when this becomes too much. I can’t bear to think of the ugly things. My husband is just too precious to me. But one thing I do know is that he loves me with all his heart. And like Jim, he is very happy and content. His eyes fill with tears when he tells me he doesn’t know what he would do without me. It warms my heart and keeps me going. Because, no one will take care of our hubbies like we do. You shared so much today. And, I am right where you are except my children and step daughter are in their twenties. And right before this all really started to become evident my husband lost his 25 year old son. So we have had a lot of grief, as well. But, thank you from the bottom of my heart for this courageous sharing today. You have helped me more than you know. Much love!!! xoxoxox Maureen

    • Lee Ann says:

      Maureen, I certainly agree with you that taking care of your hubbies at home as long as you can is really good for both of you, don’t fall into the idea that only wives are good caregivers. Working in long term care for 20 years, I have seen a lot of sad, hardened women who believe putting their husband into a facility means they are a failure, and its their job that they have failed to do. Your job is to provide him with all the love he can handle. Your job is to be a wife. While you are now a caregiver, if he ever has to go into long term care, realize that you’re best qualification is loving your husband and being a wife. Anybody can wipe a butt. And most CNAs get to know their patients and love them too. Your visits and staying half the day with him is what he needs from you in long term care. Not your back. When you cannot do it anymore, find a facility where everyone seems pretty happy and calm, they have lots of activities and family gatherings. And since you’d be there a lot of the time, you would know he was cared for. I don’t like to see women who have struggled for several years with a bad back, trying to do the physical care for their husband. We’re all getting older (except Karen, who looks like she’s getting younger, lol). There are all kinds of care. But your loving is all that he really needs, whether he is home or in a facility.

    • Maureen says:

      Thank you so much Lee Ann for reaching out. Wow, your kindness and sharing was just what I needed. It takes away some of the guilt of not having to do it all when it all becomes to much! xoxoxo Maureen

  6. sherri williams says:

    My main concern is how can I get my husband Bob diagnosed as we have no insurance, he is not a veteran, and I currently have only a part-time job that will barely pay meager living expenses. We could really use a disability benefit. When I asked the local AD support chapter for help they said to call 911 when he had a bad episode and ask them to take them to the local hospital for an evaluation. This seems to be a humiliating way to be evaluated. Do you have any other suggestions for help getting an evaluation? The tips you have for getting help such as this would be extremely valuable to some of the rest of us as well as how to get disability benefits. God bless you for sharing. We all need to know that there are others walking the same path.

    • Karen says:

      Sherri, I will try to find an answer for you. Hang in there. I am sure there is a way. But know that once you get a diagnosis, there won’t be much change in your day to day life. Please re-contact your local Alzheimer’s Association chapter about support groups, any kind of financial assistance they may have for respite care or any other programs they may offer. They should also have information on dealing with disability, but you won’t be able to get approved for disability until he is diagnosed. Also, check with your local hospitals and their financial departments. Many offer financial assistance that will cover 100% of the cost of his care. It is usually dependent upon your household income.

  7. Michelle Fox says:

    You have come so far Karen and doing such an amazing job handling everything. It is not easy. Sadly, it will get worse and you will be faced with continual decisions. I am happy you have great outside support. Forge ahead, sadly, no turning back. <3

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