Archive for September, 2015

This is an Important Statement for you to Read and Share

Jim and Brad playing some ball at his new home.

Jim and Brad playing some ball at his new home.

I have wanted to write this piece for a while but I haven’t wanted to offend anyone or hurt anyone or cause hard feelings. So, I write this with the understanding I am not trying to call anyone out for offering us suggestions or trying to help our family. Just the opposite. I am writing this particular piece in the hopes of EVERYONE reading it and understanding the gap and the disparity of assistance for many, many families in need of help. If you care at all about our society as a whole, you will read what I am about to write.

First of all, thank you to everyone who has sent in suggestions. I appreciate you taking the time and making the effort and in some cases, doing quite a bit of research. Now, let me speak freely without the worry of being taken the wrong way.

Stop. Stop telling me that I just need to make one more phone call or fill out one more form.

I have. I have filled out every form known to man. I have made call after call after call. Many times while Jim sat helplessly, just feet away, listening to me repeat our story, his story. His burdens on our family and feeling the guilt he so wanted to avoid are now seared into my mind as something I threw in his face over and over while trying to find the answer that has alluded us and continues to do so.  I have gone online and researched. I have spent hours and hours and hours (you really wouldn’t believe) just trying to find an answer. I think I have worked harder and spent more time, energy and filled out more forms than I did in all of my years of college combined.  I have always believed in my heart that we would have help. I have always believed that when the time came, Jim would be taken care of and I know he thought the same. We both assumed  I would just keep working and it would all work itself out. We were wrong, wrong, wrong.

Jim is 53 years old and a 23 year veteran of the US Air Force.

Our children are 11 and 14.

We are middle class.

Jim had Tricare Health Insurance benefits when he retired from the Air Force, which also covers myself and our children.

After being out of work six months due to his Early Onset Alzheimer’s Disease disability, Jim applied for and obtained SSDI (Social Security Disability Income) This is a program Jim paid into with every paycheck he received starting at the age of 14. It does not come close to replacing the income he was earning while working, but it most certainly keeps our family afloat.

After two years of SSDI, Jim was automatically switched from Tricare to Medicare. Medicare is a health insurance program. It is not a program that provides Long Term Care for people with Alzheimer’s Disease. It covers doctor visits and hospital stays, just like any other health insurance program.

I work out of our home as an independent contractor. I have also just started a part time job this week in the hopes of helping with Jim’s care.

I applied for Medicaid for Jim in July. You cannot apply until you need this program. So, even though we knew the day Jim was diagnosed many years ago we would eventually be applying it was only when he needed more help than I could provide that we could fill out the mound of paperwork, meet with Social Service workers and start the process. This is something I strongly believe needs to be addressed and changed. But, I will save that tirade for another day. We were turned down for Medicaid. Not because of our income, but because Jim does not qualify medically. He does not need “skilled nursing”. He does not need someone to monitor his blood pressure or blood sugar. I promise…I am not making this up.

We have gone to the Veterans Administration Hospital in Hampton, Virginia many times.  I was told each time there was nothing to help us. His disability is not service related and he is not 65 and he makes more that $26,000 a year. I went back and I called. I have been desperate trying to find help. I have sat and cried, feeling like a forsaken child of the country I have always loved and been proud to call mine. Nothing. No help to cover his care. We did qualify for the 30 day respite from the VA this summer which was a Godsend. For this, I am very grateful.

I couldn’t understand why others making suggestions of different programs he will or he should qualify for has bothered me so much. I know that each person who writes to tell me that the VA will help or Medicare will help or Medicaid covers their uncles care means well. I know when you write with your stories and your suggestions, you are trying to help. Unless you can actually make a program start covering Jim’s care, please do not tell me what I am doing wrong anymore. That is how I take it. I shouldn’t, but I do.

Recently I was talking to a good friend about this. I told her I understood people were trying to help because they care and they want to help our family but with each sentence saying there is help out there if I only would do this one thing, I was hurting more and more. I couldn’t figure out why. Why would it bother me when I know I had done everything and I know their intentions were good and genuine?

“Because it is a sore, raw subject for you Karen. You still feel like you have missed something and you also feel like there should be and is a program to help if you can only find it. Each message reminds you that the system is failing your family and it makes you feel like you are too.”

And there it is. I struggled to understand something that she layed out before me to make perfect sense.

I agree with all of you: There should be help. There shouldn’t be a need to have a charity page asking for donations from everyone under the sun to take care of Jim. It was a most difficult decision to do so, but I cannot take care of him the way he deserves. I cannot change his diaper and help him shower and help him all day long with finding something to occupy himself. I was failing him and our family. But this is not anything that qualifies for help. Needing assistance with eating or hygiene does not entitle you to receive help with your loved one. We don’t fit into a black and white box and therefore there are no possibilities of going outside the box to use common sense to help. Either you fit the criteria or you don’t. We don’t.

I have met with our State Senator, staff representing our US Senator, social services, Medicare and Medicaid representatives and VA representatives. Nothing yet. There is a slight hope we may receive some benefits from the VA, but my attorney (who completely rocks) and a local reporter and our US Senator haven’t been able to make it happen yet. But, you never know. I am still optimistic, but now with a much clearer sense of probability.

So please understand I have put more effort, energy, time and hope into finding this solution that must be out there somewhere than I have put into anything else in my life. It is like pouring salt on a wound when you tell me I haven’t done what I have been trying so very hard to do for months now.

I appreciate your belief in our system, as I have always had your same beliefs, but sometimes, we are all wrong. Please keep writing me and if you genuinely have something that you have found that can help our family, please share as I am hoping there really is assistance available. Otherwise, please start a conversation with your friends and neighbors. You may be surprised to find they have been through this same process. And if you are so inclined, please start advocating for a change. It will be too late for our family, but others coming behind us, which could be your family, need us to stand up and demand all of our citizens be cared for and treated with respect and dignity. No one should lose their homes, their life savings or their own health in a  land that prides itself on prosperity.

Jim, Frances and Brad. April 7, 2012. Jim's 50th birthday.

Jim, Frances and Brad. April 7, 2012. Jim’s 50th birthday.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (44)

Alone

Frances, me and Brad getting ready to leave family camp. Aug 2015.

Frances, me and Brad getting ready to leave family camp. Aug 2015.

In the middle of the night I reached out, my legs stretching to a cooler feel of sheets only to find an empty bed. An empty space that was once filled by a warmth, comfort and security that will not be there again. And that is a sobering thought. How can my Jim, so handsome, so healthy, so capable not be around to make me feel whole again?

There is an empty space that seems to grow larger each day. Not just because I must now navigate everything solo…I was already doing this. The yard, the bills, meals, laundry, schedules, rides, chores, discipline, everything was already on my shoulders. Yet, there was something about him being here. Something about his smile, his aura. I am broken and I honestly know without a doubt I will never be fixed or whole again. There is not a possible way to fill the hole Jim has drilled into my soul. I must learn to accept my fate, but can I accept this fate for him or our children? It is a pain that is indescribable to sit idly by as he forgets our childrens’ names or doesn’t show interest in them, their activities or anything happening in the world around us. He does show me love…he kisses me when I leave him and he lights up when I visit. Our love story is still solid in his mind and for this I am grateful.

I am living a life that is actually on hold, swirling in a tornado, yet moving forward for those that need it. I believe I am stagnant in my mind, my emotions and my ability to be. Be me. Be a friend. Be an employee. Be a neighbor. Be an advocate. Be anything. I am lost. I am in a swirl that at times seems to stop, but ultimately I am thrust into a world that I am unable to master. For someone with the personality I have, this is very difficult.

Jim is happy. He is in a much better place. No smells. Lots of activities. Clean. Close to home. Home. Our Home. What is his HOME?

Where is my rescue? I know….I don’t have one. It is me. Me. It is my responsibility. But I must admit, I have never thought of owning a house ALONE. Or being a parent ALONE. Or planning vacations ALONE. Or dinners, lunches, breakfasts ALONE. Yep, movies, concerts, everything that I always took for granted Jim would be there  in a way that was easy and assuming is gone. Recent invites to parties, dinner gatherings, are for one. For me. I am now the plus one.

When Frances, Brad and I were at family camp this summer, there was a closing ceremony and a children’s group award ceremony. Who did I sit with? Remember….family camp. Husbands and wives. That was us. Yet now I sat alone. Alone in our bed. Alone in our van. Alone at our table. Alone. Yes, we have two awesome and amazing children, but they have plans and friends and activities. I am alone. And Jim is 5 minutes away, alone with his new friends. We are alone in our respective worlds, somehow missing who we once were yet unable to recapture it. Ever. And that makes me so sad. So very sad.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized and have Comments (19)

The Next Phase is Here.

Screen Shot 2015-09-04 at 1.10.45 AMI have started and stopped this writing numerous times. Too many to count. I’ve, no, WE’VE all known it was coming for a long time, but we didn’t talk about it. We hemmed and hawed and left it unspoken and hanging over us like the chill that comes with the first frost; so unexpected you are able to fein surprise although it re-occurs like clockwork each year.

Yep, you can see to the bottom right of this writing a new widget. A place to click. A place to give. A place for us to take. And if ever there was a time I was full of mixed emotions, this would be it.

Over a great length of time, we have had several people offer to help us fundraise. I have been flattered and a little surprised, but have held off. After all, there are always others in need and I have always felt there is a time we will need more help and if I can just figure out a way we won’t need any.

Over the past three weeks Jim has been in a locked memory care unit to allow myself and the kids a respite from his care. And let’s be honest, we haven’t even been caring for him as long as many others have. But, our family was under a great deal of stress and the walls were crumbling and I saw a source of support that I latched onto for dear life. And it pains me a tremendous amount to announce the three of us have witnessed something we didn’t expect or want to admit….life and “normalcy”. What a cruel woman and wife I am to say such a thing. But I always have promised to be honest: we found ourselves able to “be”. Be relaxed. Be loud. Be late. Be early. Be silly. Be happy. Ouch. The last one really hurts. It feels as if we are somehow vilifying Jim or ostracizing him in some way but we aren’t. We are trying to live as he declines. By doing this, we are carrying on as he wishes but even that knowledge does not erase the sting from feeling as if we are abandoning him or that he is forsaken.  Just the opposite.

While at this facility, not only have we been able to breathe easier, Jim has been happy. He has a simple life that remains constant and without interruption to his schedule. That is what he needs and being in our home makes this almost impossible. His new self needs quiet and peace which doesn’t happen often in a home with active children. Plus I worry about him on the stairs since we do not have a bedroom or a full bathroom downstairs. And I worry about him walking out the door. And I worry about him eating or drinking something he shouldn’t, hurting himself with a tool or  knife or something he would be able to use simply in the past. I hadn’t realized until he wasn’t with us how much I worried. And the kids have noticed too. Recently we were discussing all of this unforeseen change and they both agreed I am happier and not as stressed all the time. Another ouch and another not so proud Mom/Wife moment.

I sat and watched our wedding video for the first time the same night our very good friend, to whom I will forever be indebted, started the GoFundMe Page to raise money for Jim’s care. I cried. I laughed. I reminisced. By myself. There were guests there who have since passed. Couples now divorced. Images long forgotten through the years of marriage and children and life. And there was Jim. My groom. So proud. So handsome. So, so perfect….

This is all just a huge mess. I don’t want help. But we need it and I have run out of options. I have fought asking for anything for a long time and it wasn’t until a conversation I had recently with someone who went through losing a wonderful husband to Alzheimer’s said to me, “Karen, I would rather give to your family and know I am helping you than to anything else. You have exhausted all of the ways you thought you would be able to get help and there isn’t any help for you. We all know you have tried and that there isn’t anything out there. You don’t have a choice. You cannot possibly take care of two children and Jim. It isn’t fair to any of them and it isn’t fair to you. Let others help. Trust me, they want to. Many want to but don’t know how and with it being an organized way for them to give, I really think they will.”  I thought and thought about her words. I cannot express the gratitude I have to her for saying them, nor can I express how much I really don’t want to be in this position.

Yet, the world never ceases to amaze me. The support that has come forth is truly remarkable. We have already raised enough to cover care for Jim for one month! Obviously, we need much more, but wow! I am so humbled, so moved and really, for a rare instance speechless.

There are so many others who need help and I feel guilty for possibly taking something away from them. I lay in bed thinking about this. Thinking to myself that if I can figure out a way to take care of Jim, others can receive the aid and help I would receive. And I am so sorry I haven’t figured that out yet. But at the same time I have become desperate and see no other way. So thank you for your support and for your very kind words. Thank you for the stories of Jim. One friend posted on her Facebook page a story of how Jim installed their car seat when their oldest son was born because her husband was deployed. I had completely forgotten this and it was a reminder of how much Jim always did for others. In the throes of this complete and utter quandary I often forget just how handy and giving and genuine Jim was. It makes me sad to remember him from years ago, but it also makes me proud to be his wife and to be charged with his care. He trusts me and I trust that we will not be forsaken.

If you can give, please do. If you can’t, please know I understand and all I ask is for you to share this link with your friends so maybe they can. The more who see our story and our plight, the better the odds of us receiving enough to make it through.  THANK YOU SO VERY, VERY MUCH.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (19)