A Broken System Will Not a Broken Woman Make

For the first time since I started this endeavor I am writing directly on my blog without taking the time and energy and forethought to edit and proofread and ponder over my words before putting them out for the world to read. I am too tired. Too overwhelmed. And frankly, too frustrated and mad. Mad at our system.

Don’t get me wrong. Our friends, neighbors and even strangers have reached out over the past week to offer guidance and help in many forms. I am grateful beyond imagination. They have saved us and I really, really am humbled. But ultimately, our family is still left hanging on a ledge and hoping a huge gust of wind doesn’t blow through.

Jim is home. I know you have been worried and you have been praying and you have sent me your advice. Thank you. His sisters were able to drive him to Delaware and a very special friend rode with me for the 11 hour round trip to pick him up and bring him home. We didn’t know what would happen and I am pleased to tell you the ride was fine. He is fine.

Well, he is hard to understand. He needs help with showering and shaving and getting dressed. He needs verbal cues with washing his hands after using the restroom. He is confused many times and still insists he had to “beat the shit out of two guys”. But he is calm and his usual passive self. Obviously, I cannot leave him alone. Which is why I had to have a friend come stay with him the short time I needed to leave to go visit my counselor. Who listened and then stared at me, momentarily speechless (I don’t think this is a good sign).

I am going to try to do a quick overview of the past week and why I am mad and frustrated and feeling our system is broken. While Jim sat, many hours away, in a psychiatric unit, I called and begged for a way to get him safely home. At the time I started this process, we weren’t sure him riding in the car would be possible and an airplane ride was definitely out. Insurance would not cover a medical transport. So, he had to stay much longer than he should have. And I am ashamed to say I had very little time or mental capacity to really focus on him, how he was and where he was and think of him emotionally. I was too busy being focused on the paperwork and the problem of figuring out what to do. If he had had a stroke or a heart attack, I would have been able to rush to him, focus on his care, his recovery and not think twice about what to do about care when he was back in Virginia. There is nothing I could ever put in writing that will evoke for you that guilt of knowing I was more worried about other stuff than about him. I didn’t rush to be by his side because I had to think about what to do when he came home. This will haunt me for a very long time.

Once I realized I would have to get him home with no financial help, I had to decide what to do with him when he returned. Would he be ok at home? Would he get violent again? Is this the time to put him in a home, making it an easier transition? There were endless questions constantly running through my mind. All the while, our 11 year old son sat idly by waiting for me to get off the phone or off the computer so we could spend some of the quality time I had promised him weeks ago. Time that unfortunately didn’t really happen. Again, the guilt and the sadness cannot be conveyed.

Knowing Jim is retired Air Force, many have suggested the Veteran’s Administration. Jim unfortunately thought that too. It was always his understanding that if he put his 23 years in, he would be taken care of later. Granted, he always thought it would be when he was much older, but he always told me when he got too old and cranky for me to take care of to just stick him in a VA home. How I wish this was so easy to do. Jim does not qualify at this time (that I can find) for ANY VA help. His disability is not service related. He is not over 65 years old. He did not serve in Vietnam. He is not a Gulf War Veteran. Our family makes over $26,000 a year. I checked, re-checked and then checked again. If anyone knows anything different, please feel free to share the magic pass code. I could really use it about right now.

I also applied for Medicaid. Although I haven’t gotten the official word back yet, our chances of getting approved are pretty slim due to our income. Please don’t think we are living high on the hog. We are a paycheck to paycheck family. We own one car. One 1,600 square foot home. One TV. Yep, I splurge sometimes and get Starbucks and I have an iPhone that I bought for my job at the time almost 5 years ago and we’ve taken some nice vacations over the past couple of years. Trust me….this does not mean we can afford care for Jim. Unless we take EVERY SINGLE PENNY that we have coming in each month (I’m not even sure that will eventually be enough), then we could afford his care. Of course, at that point, there would be nothing for myself or the kids. And by the way, I will also have to spend almost all of the retirement and savings we have. So that whole rule about having 6 months salary in savings in case of an emergency? Gone.  Then we could have the state pay for our healthcare, our home, our food, our heat and even our children’s braces. And, I will not have money saved for my own retirement therefore I will also need assistance when I am older. So, to keep from using the government to help with Jim’s care in one program, our family will be reduced to using multiple government programs to stay alive. Then I see that our government is trying to cut disability payments next year by 20%? Really? And I am supposed to stay calm, cool and collected?

I cannot possibly explain the amount of frustration this causes me. I do not feel we are a family who is trying to take advantage of the system. We are in a unique situation, but because of rules, regulations, guidelines and black and white protocols, we are stuck right in the middle. We don’t make enough to pay for care, yet we make too much to receive aid. The programs currently in place are for retired people who can sell their homes and use up savings and retirement to pay for care, or they will then qualify for government assistance. It is not set up for middle aged families who may need that retirement later and who have young children at home and cannot sell their home to pay for care. As a disclaimer: Medicaid does allow us to keep the home and the car. The previous statement is in reference to who the people had in mind when they wrote all of the guidelines for the program.

Let me give you an example of a conversation I had this week. It will hopefully show you how much I feel like I have been a hamster in a wheel…..

While at the VA hospital, meeting with a Veteran’s Representative, I was asked for a letter from when Jim retired. It was his disability rating letter. I didn’t have it. The very kind gentleman told me I would need a Power of Attorney in order to get a copy. I pulled out my copy and tried to hand it to him. “No, you need a VA Power of Attorney,” he says to me. I look down at my copy and in bold, capital letters at the top of the very first paragraph it says MILITARY POWER OF ATTORNEY. So, I try handing it to him again and tell him it was done on a military installation and is a military POA. “No. It has to be a VA Power of Attorney. That one won’t work.”   Are you kidding me? This, while Jim sat in Connecticut, waiting for me to figure out something to help him. After all the years he served and thought he would be ok and not a burden to his family or anyone else. After I sat and cried for a moment, I asked the same kind man how I could raise my family on the $26,000 a year they expected in order to quality for Aid and Attendance? He very quickly told me that combat war veterans were coming back and living on $8,300 a year.

And what could I say to that?

Now I am just treading. Keeping my head barely above the surface and hoping all of the red tape, regulations and bureaucracy doesn’t pull me under. How am I expected to take care of two children and Jim with no help? If I was independently wealthy, no problem. But I am not. We are a middle class family trying to find a needle in a haystack.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (26)

26 Responses to “A Broken System Will Not a Broken Woman Make”

  1. Marilyn Klotzer says:

    Karen, I am so happy you got Jimmy safely home. Thanks to you ,Diane and Sandy getting him out of the hospital and home.so sorry you can’t find any help for him. I agree with you on everything. Jimmy should get help from the VA after all the years he put in the Air Force. So many things you did to get help for your family. And Medicaid should hep you too. I t helps so many other people. The amount of money you have coming in is not that much for a family of four. I wish you all the luck in the world in getting help. My prayers and love are with you. Stay strong.

  2. LaQuita says:

    I read your post as another younger Alzheimer’s wife/mother. Our daughter was 13 and my husband 39 when we first heard Alzheimer’s as a possible diagnosis. That was in 2004. God has been with us over the years.
    I have also faced the VA and felt that we fall through the cracks. We went through the process to get him in the system. He, fortunately, could verbally say to the social worker he wanted me on VA POA.
    I still would be financially drained when he needed to go to any facility.
    I am thankful you got your husband home.
    Praying you can find help.
    I just recently found your blog so I don’t know if you have contacted your local Alzheimer’s Association for support. I have found in our rea, we are the youngest, but, the leader is fantastic about knowing what is available.
    You are not alone, thank you for writing!!

  3. Jeanne Sapia says:

    I am so sorry Karen, I wish I was knowledgeable in things like this so I could help you. I am praying for you and Jimmy every day to get the help you need for this. I do know that letting go and letting God does help for small periods of time. God bless your family,

    Jeanne

  4. Beverly Kerr says:

    have you looked into Medicaid waivers that are available here in VA? I know this is a long shot but just thought I would throw it out there. I am so sorry that you are having to deal with all the “other” stuff. May God bless your efforts.

  5. Christine Felts says:

    Karen, you need to send this to every governmental representative in the Commonwealth including the Governor. There has to be a way to use the VA and Medicaid if need be. I think of you all the time and pray for your life to be bearable. I’m glad you’re sharing your life with a professional. God Bless you all and keep you in His loving care.

  6. Beth Klug says:

    Although the VA will probably be of little help to you at this time…if you need to deal with them, will the VA allow you to get a physician’s statement that Jim is incompetent to make his own decisions to act on his behalf as next of kin? I had to deal with all of these issues while caring for my step dad. I can share the info regarding the arrangements that we had in place and also some of the facilities that we explored. Just let me know if it would be helpful. I think of you often. You and the kids are in my prayers!

  7. Connie Howard says:

    Karen,

    I have walked the path you are now walking. My heart aches for you. Every time I think I have taken care of things legally or health related, something else comes up that needs to be addressed. I was told recently, Glenn could be in the last three months of life. He is 59. I see Jim progressing quickly. I wish some of the money being raised for Alzheimer Research could be used to help families struggling now. It seems more would be available if Glenn was older but we need help now! Hiring an Elder Care Attorney would be good. The trick is paying for that and finding a good one that can truly help. Your are now facing the big challenge of getting care for Jim. Hospice can help and medicare paid for that for Glenn. Jim should qualify for the care as he has lost the ability to handle the daily living skills. You are at the point that all you can do is tackle one issue at a time and live moment by moment and not day by day or even hour by hour. I had to live in the present and not the past or future. I kept reminding myself and God that he knows our situation, He loves me. He loves Glenn, He will never leave nor forsake me, and He will provide what is needed. You and your family are in my prayers. Hugs!

  8. Mary says:

    I have been through the Alzheimer’s Disease hoops as well as Medicaid. It is amazing that only some vets get help. I suggest you get in contact with your congressman and also with Hospice. He may be eligible for inpatient hospice care and at home hospice care. I am so sorry you both are caught in our system’s ridiculous rules.

  9. Jeri says:

    Karen, I’m so glad to hear that Jim is home but so sorry to hear about all of your struggles with the system. It is definitely a broken one. I found that out as well, during every step of the way dealing with this illness. And it still infuriates me when I hear it again from someone else. I wish I had answers for you. I know everyone else does to.

  10. Julie d says:

    Dear Karen,
    I know exactly how you feel !!! My Jim is a 20 yr veteran of the navy. He is 49 yrs old and in the “moderate” stages if you will. We also live in VA. I have been trying to navigate the VA system/Medicare and everything that goes with it. Is your Jim on SSA/SSI ? I think we have VERY similar lives ( if you can call this living ). If you would like to compare notes or just need someone who understands send me an e mail and we can talk . Hang in there. You are not alone !

  11. Karen, I don’t know how you keep on being a wife, mother, attorney, business woman and keep on going. Joe had Alzheimer’s and as heart breaking as that was you are on a different treadmill seems like you are going no where.
    Last night in a moment of grief feeling alone I realized what I was feeling was: I am home sick for Joe. I am editing my next book but the title is up in the air. Maybe, Feelings of Steel with Love, Farewell to Memories of Alzheimer’s, Alzheimer’s is the Devil..???

  12. Teri says:

    Ugh! I was just reading this and wondering the same things about the obstacles that you are facing with the military benefits. I was actually lying in bed with my husband last night (him half awake trying not to fall asleep on me) and he was also under the assumption that it should be easier to get assistance via the VA. He is also 21 years retired Navy submariner. I guess he always just assumed it would be a given to be able to get things and now is rethinking this. I gave him a quick rundown of what was going on with you while he was still awake enough to listen and the sobering reality of just all you’re going thru. While I have no experience with any of this, my heart goes out to you. We are in Williamsburg and I know I have not much in the way of assistance to offer but ….. you never know right?!

  13. Chris says:

    Karen-
    It’s at times like these when living one day at a time is too overwhelming and we must crank it down to one hour at a time.
    First, I am so glad that you were able to get Jim home. And the fact that you THINK you were not worrying and wondering about his well being…well, you were. Every piece of paper, bureaucratic hoop jumping, screaming and ranting you did was for Jim; for his well being; for his safety; and for his benefit. I truly believe all of your worrying about him was running in the background and providing you the adrenaline needed to keep moving forward-even if it was at a baby step pace.
    As for the VA, I know they wanted my husband’s DD214 to determine if he was in active service or, if in the National Guard, the unit had to be activated during his service. I’m not sure that it would have entitled him to anything more than a few hundred dollars per month towards his care. But alas, he was a member of one of the few National Guard troops not activated during Vietnam. So, I’m not sure why Jim would not be eligible for benefits-even if it is a few hundred dollars a month to be used for in home care.
    I’m sorry he has returned so confused and has regressed during this time. How frightening for everyone!
    My only advise is prayer, try not to look too far down the road, make a list, visit that elder care attorney who specializes in Medicaid and estate planning and try to prepare as best you can. There is more mis-information out there than useful information. And it seems that the rules to qualify change every single year. I know I when I went through planning with my elder care attorney, he was very helpful for many things. When I arrived at the local Social Security Office is when I learned that he would never qualify for Medicaid because of his retirement plan. It forced me to develop yet ANOTHER plan.
    And in case you did not know, God laughs while we are all making plans!
    Take time to remember that you got him home safely. I’m VERY impressed that you coordinated his safe passage home.
    I’ll keep praying for you all!

  14. cate says:

    A friend in Clearwater, works for an elder attorney. Walt Shurdan. Is asking about Virginia resources. suggests you contact your state representative. will let you know if there are any referrals from his camp. You are in my thoughts and prayers

  15. Andrea says:

    I have heard that your local ombudsman can assist with such issues….in the same boat but not yet ready to look for placement…still praying we can manage at home until the end but it sure does become much harder once they become fully incontinent…many prayers for your family

  16. JOAN says:

    Glad Jim got home safely,so unfair Jim’s employer
    cannot help,a different system here in Canada.Don’t give up you’ll find resources somehow,I believe in you!

  17. Karie says:

    Karen..definately check with Social Security. I will sit down and see if I can figure out how to help you furth er. We lost our Jim about three wks ago. Hoping I can help. Hang in there.

  18. Missy says:

    I know it’s difficult. But there is a way to get both the veterans administration and Medicare to kick in. It’s drastic, and just paperwork, but it works. I’m talking about divorce. You should talk to someone about medicaid divorce and how to set it up by someone well versed in elder care and estate planning.

  19. Julie Harrell says:

    Hi Karen,
    I discovered your blog via a friend of yours. I’m in Chesapeake. I’m going through this system nightmare with my mom. I have hit brick walls for over two years with Medicaid. She makes too much SS but not enough to qualify for care etc. I finally gave up and hired an elder care attorney. They accomplished more in 2 days that I did in 2 years! They know every single case worker in Social Services dept, etc. Their office is in VA beach – – Oast and Taylor. I have also heard good things about The Hook Law Center. I will also add that it was significantly cheaper than I thought it would be – – but most importantly, it took one of the many burdens off of me. No one can “do it all”. I wish you luck and will keep your family in my prayers.

  20. Delaine says:

    Dear Karen, I do not know what to say other than what has already been said. I WILL say that all this scares me to death and makes me furious at the same time. When I think of the astronomical numbers of people that are literally cheating the government for money that they are too lazy to work for and hearing that you are in such dire straights with not much, if any, help in sight for your military retired husband, it makes me ill. If I could march up to Capitol Hill right now with you and lay them all low for making this all so difficult for you and so many families dealing with Alzheimer’s, I would. This is all wrong on so many levels and I wish I had some tangible answers for you. Your fight is our fight. I am praying for some answers soon. Please do not give up. You are making a difference whether you realize it or not…I am just sorry that it is coming at such a high price. God bless you and your family. Please continue to keep us posted.

  21. Nancy Pontier says:

    “Cannot add much. Get elder lawyer. Suggest
    Hook firm. Web site Veteransaid.org for information. Money options are disability insurance from employment, Medicare disability, Medicaid, VA nursing home, Va aid and attendance.” These are very cursory notes provided by my husband, who deals with this type of dilemma in his medical practice. I hope one of these ideas helps. He especially recommended the website. Best wishes in your journey together.

  22. Anne says:

    My God, Karen, I am furious along with you. That this man served 23 years and the VA won’t/can’t help is criminal. What I recommend is crowd funding. “Go Fund Me” would be my pick. A headline that says “The VA failed my vet of 23 years!” Give a brief synopsis and a link to the blog. I’ve read it works best when you have a video so a short video of you, the kids and Jim. You need help to survive! I sure would send a donation. God bless you, I’m praying every day for you my dear.

  23. Sandy says:

    I know you don’t want to talk with me but if crowd funding is something you would consider I’d get it setup and write some posts. I certainly have lots of thoughts to share like you. Let me know

  24. Jana says:

    Karen, we have met in D.C. I am one of the IN Ambassadors along with the Hatkes. First let me say I am so sorry that in addition to worrying about Jim and your kids you also have to face the worry of negotiating
    for his care. I second the recommendation of contacting your Representative and your Senators and asking for them to step in on your behalf with the V.A. Secondly I a
    recommend getting an attorney who has lots of experience in dealing with disability, Medicaid app and navigating the health care system. Lastly I would check with your local Aging and In Home Services. I know Jim is young but our local office here in IN also assists with all those over 18 who need in home services. There are some grants for respite care in home that are NOT dependent on income and will provide up to 3 months of rsspite care if the person needs assistance with more than 3 ADLs. Granted it is not a long term solution but may help while you are searching out other options. Karen, while it is not of any help to you in the immediate case, please know that I am thinking of you and your family and hope some doors open that will ease these worries and provide some good solutions.

  25. Marsha says:

    It took me 5 months to get my husband on Medicaid. Because know one, particularly Medicaid tells you how, what, when. Then there was the “spend down” of our our funds. My POA was good some places, some places no, the IRA, the bank – I have no idea why. I placed him in a nursing home. It was terrible, I lived there. So I took him home, thought I could do it and my share of Medicaid was $2,900 a month so that would go a long way. After 7 months I wore myself to the bone and Medicaid said…we are taking him off. So I put him back in a nursing home. If you ever find a decent one, please write or call. Five days a week I go there for 5 to six hours, my son goes the other two days. I do all his laundry or it goes missing. Most of the time I take his dinner, the food is horrible and not for an Alzheimer’s diabetic. Finally after Passport (an OH program) turned us down for having “too much money” – no we are not rich!!..and after a year in the nursing home I have him under Hospice as he know longer knows how to walk. He still eats although he doesn’t know the difference between a knife and fork. My entire family says it will kill me to care for him at home, but I now longer care. Medicaid made me pre-pay funeral arrangements. At least I will know he is not sitting in a wet diaper, that he has a decent dinner and there are lights on in his room and a TV, although he doesn’t know what it on, it keeps him occupied. No one but those who walk her know what this is like, no one. Guilt is your worst enemy and the hardest thing to overcome. Some elder care attorneys are great, some just want your money and do nothing. I know more about Medicare and Medicaid and medications than I ever wanted to know. I am a book on each subject. My parents both died of cancer and I lived with them till their death, my daughter died of a rare brain disease completely unlike Alzheimer’s. But this one is the worst of all, hands down. I don’t visit your site often because I know what is ahead and I can’t help you, I can’t help me. I can only pray and hope God will listen.

  26. Virginia says:

    Zen hugs if we could reach you we would, a twist on Anne McCaffrey and Mercedes Lackey Ship Who Searched, this is nuts, I feel for you and your family wich I could explain myself better

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