There is a Solution, I just haven’t found it yet

quote-about-figuring-things-out-and-moving-forwardI am exhausted. Mentally more than physically. The paperwork. The worry. The constant watch. The pure, unadulterated sadness. It is beyond overwhelming, it has changed my thought process, my soul and my inner-sanctum.

Watching a person die is horrible. Watching someone you love die is worse. Watching someone you love die a slow, tortuous death is beyond comprehensible. The guilt, the helplessness, the frustrations, the anger, the heartache, the wish for it all to end…. There are times I wish Jim was afflicted with something simple like cancer or heart disease. Not only would there be hope for him (and therefore us) but there would be more support and understanding from the world around us. And most importantly, HE would still be with us.

The endless paperwork, processes and lack of understanding from any system that can help us is completely unbelievable. If someone else in my situation was telling me this story, I would immediately think that there must be something they have missed, there must be a solution and obviously they haven’t tried hard enough. Well, I am here to tell you….I have tried.

Many readers have been so, so kind and reached out with suggestions and ideas and just thoughts of love. Thank you. I want to address the following to you:

Jim is retired Air Force. He is currently on Medicare because he has been on Social Security Disability for over 3 years. Once a person who has Tricare Health Insurance collects SSDI for over two years, they are automatically switched to Medicare. There is no option.

We have applied for Medicaid and have been told our case should be reviewed and a checklist should be sent out sometime during the first part of August. In the meantime, I just wait to find out what paperwork they will need. I have done some research and so far have gotten together most of what I think they will want….every bank account, every insurance account (they want to know if life insurance policies have a cash value), every investment account and our mortgage statement. It took me several days to get all of this together. Obviously the person(s) who decided this whole process have never in their life been in a predicament like we are currently facing. The application, the turning in of said application, the conversations on the phone, the gathering of information, the waiting for an answer….it is almost as if they are trying to just wear people down so they don’t finish the process so they don’t have to help them. How do others get through this??

The Veteran’s Administration. Oh boy. Where do I start? Should I tell you about the gentleman who was supposed to be helping us with our intake questionnaire but instead  WAS WATCHING COLLEGE BASKETBALL on his computer? Let’s be honest….it isn’t college basketball season which means it was a re-run which means he already knew who won anyway! Ok, I am moving on….Jim scored a 9 on his MMSE. Some of you who have travelled this road know that means he tested in the severe range. How unbelievably awful it was to sit, as the psychiatrist, who obviously has no Alzheimer’s Disease training or background, tried to ask Jim about his recent psychotic break. Then tried to carry on a conversation with him. Then asked him simple questions he could not answer, as I sat and watched, tears streaming down my face. Awful. Just awful. But at least the kind doctor said he would try to help us and would try to find a way to get Jim care. Again, his disability isn’t service related. He isn’t a Vietnam Vet or Gulf War Vet and he is not 65. We make over $26,000 a year. We are the middle class and we have nothing.

I sat at my desk the other day just dumbfounded by this whole mess. How am I expected to take care of Jim the way he deserves AND take care of two children the way they deserve? And somehow keep sane? Actually I am not sure I am at this point!  $6000 a month is the starting point for Memory Care. I sat and figured out where I went wrong…If we had saved $500 a month for each of the 18 years we have been married, we could cover 18 months of care. But, we didn’t. Please let this be a lesson for all of you. In other locales around the country, the costs are double. So start saving my friends.

Jim is still home. He is doing very well. He is happy in a childlike way. He now needs assistance with getting dressed, with shaving, showering and unfortunately parts of the bathroom routine. He takes it all in stride, not getting angry or embarrassed. Well, occasionally he snaps, “I can do it” and there have been a few moments the kids were scared because he seemed to be getting agitated and we are all on eggshells knowing what happened in Connecticut,  but overall he is easy going. I feel bad because he can’t figure out things to do without constant urging and help. He will sit and color at the table, but needs some direction. I, unfortunately, am at this point either making phone calls, trying to fill out paperwork or collect needed paperwork or fixing dinner, or starting a load of laundry or  trying to make sure I focus some attention on the kids to remind them I love them and I do want to hear about their day and their thoughts.

I have not left Jim alone since he returned and I now feel like a prisoner in my own home. He has returned to the wonderful respite program he attended before a couple of times a week but otherwise I have a shadow.  No quick runs to the store, or walks with friends or private conversations (he is always lurking within 10 feet of me) or ALONE time. None. On one hand, it is so sweet that he loves me and needs me so much he cannot possibly be out of sight of me. On the other hand, I am reminded of crazy stalker people and no one wants to feel as if they are constantly being watched and followed. It is creepy and unnerving.

I need $72,000+ a year on top of the income needed to take care of myself and the kids to now take care of Jim in a facility that will keep him safe, occupied, clean and happy. I hate that money has become such a huge issue in his care, in our story, in the eventual way he is taken care of. I believe all that should be at issue is making him feel safe and loved as he dies. Helping our children lose their father with the least amount of long term affects.  I struggle every day to figure out a solution. I am college educated, strong, smart and capable. There must be an answer and I must not be good enough to figure it out. After all, it just doesn’t make any sense to  not have a solution. Wonderful suggestions have been made: Go Fund Me pages, ads on my blog, selling the rights to our story, divorce, spending it all down and using our savings because I am young enough to build it back up again, in home care, re-doing our walk up attic for him and a caregiver, etc. How is it that so many others have dealt with this situation and yet we are still not able to call the right person, hear a few viable options and pick the one that best fits our family? Lots and lots of ideas have been floated our way and it’s just hard to know what the right answer is. I suppose I will never know what the right answer is. I will be forced to make the decision I can make and then I will keep moving forward because that is what we do. Humans keep moving forward. Through grief. Through pain. Through hard times and even through good times. We all move towards some unseen light and hope that along the way we are consistent with our happiness, our love and our contributions to others.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (17)

17 Responses to “There is a Solution, I just haven’t found it yet”

  1. Debbie says:

    Karen, it has been awhile since I last wrote. I follow your struggles and know your pain and frustration. But until someone is forced to live in your shoes, they have no idea what a struggle each minute is, not to mention the hours, days, weeks, months, etc. I pray that you can find some answers, and can find some little me time. I heard all the same advice, but only you can decide what is right at any one moment for your family. Unfortunately those in power to make changes have the financial means to deal with these serious issues, and the middle class voice gets lost, the poor is taken care of somewhat.

    But I truely believe you and others like you are making a difference by being the voice of those in need. Will it happen in time to help Jim?? Probably not, in time to help your kids, I really hope so.

    May God bless you and your family. From a widow of an Early Onset Alzheimer’s victim, who fell in this category of to young, to much assets and no voice. Thank you for sharing!

  2. Kathryn says:

    I have, for some reason, avoided writing a response to your blog for the past few years, though I’ve followed it religiously. Your honesty – your openness – your brutal and direct description of your life’s events are serving a greater purpose than you could ever imagine. I am in awe of your ability to put everything on the table for all to see.

    I am a 30 year old mother of three in rural (very rural) Wisconsin. I’ve watched several of my family members crumble and fade to this atrociously heart breaking disease. My mother, now 63, has also been diagnosed.

    My degree is in music therapy, and I have felt compelled to work with Alzheimer’s/Dementia residents my entire life. I worked in a secured unit in a nursing home through high school, and did in-home hospice care through college for patients who had been diagnosed and were awaiting state funding to enter a memory care facility.

    Upon my graduation, at the ripe-old-age of 23, I was given a wonderful opportunity to be the Director at an 85 bed memory care facility near my hometown. To have the job handed to me was one of the highlights of my life. What I thought would be my biggest challenge was the handful of jobs my college life hadn’t prepared me for – I was overseeing the entire building – staffing, payroll, resident status, healthcare, medication administration, kitchen ordering, supplies, etc. Hundreds of little things that I had never done before and at the start of my time there I was TERRIFIED that at some point I’d mess up on something of that nature. What if I didn’t remember to give someone their holiday pay? What if I had someone with too much overtime? What if I didn’t have my cook order enough supplies?

    What ended up being the real struggle caught me off guard.

    Two months into my time there a beautiful family came to see me. A mother, age 48, her husband, and their two children who were 22 and 24 at the time. She had been diagnosed with early onset Alzheimer’s disease and it was progressing quite quickly. She had gone to see her physician so that her they could get her POA activated and all those details squared away. She had been a career waitress – always busy, quick on her feet, a smart remark for everything, and a soul that omitted so much goodness that just being around her made your heart seem to sing a tune.

    So here they were. Sitting across from me. Holding a letter from their physician that said YES, she needed to be in a community like ours and she was no longer safe to live at home.

    They brought in their financial information and all sources of income – her children had generously decided that they each could contribute a small amount as well. They could pay up to $1600 a month for her care.

    Our memory care started at $4,500 a month.

    The management company that hired me to run the building would not allow her to move in.

    This was over 7 years ago, but I can close my eyes and see their faces when I told them there was nothing I could do. I ruined their lives. They were put on a waiting list for a company near us called Northern Bridges that provides large funds for patients like her, but by the time she was approved to receive funding she was dying at home with hospice care at her side, while her husband and children attempted to muster up any remaining energy they had left – they’d been forced to care for her themselves, in home, for 3 years.

    Our nation is unprepared. For patients in the eve of their life, who own their own car/home, our system is painfully expensive – sell the estate, the car, the good jewelry, the family heirlooms – now they’ve made a nice dent in their final expenses. For families like you we have failed. You can’t sell your home/care/etc – you have a family to raise and a life to live.

    I left that position 5 years from the day I started. I miss it. I miss the residents. I miss the families I was able to help. I miss the lessons I learned on a daily basis, and the hugs, kisses, laughter, and tears I shared with the residents. There was quite a lot of each one of those!

    But I couldn’t do it anymore. I was so emotionally drained at the end of those 5 years. I was, at that point, a 28 year old female on blood pressure medication, anxiety medication, and a hefty dosage of sleeping pills, trying to take care of a 1 year old and a 3 year old. It was a terrible existence and it is a horrific feeling knowing that you had a HUGE line up of people in your career that you couldn’t do a thing for. Not a thing.

    I have no supreme words of wisdom for your situation. I have no answers, no suggestions, and no helpful tips for funding – each state is just as broken as the next.

    What I will tell you is this: You are a beautifully courageous woman. You are living the nightmare I witnessed over and over, and you are living it with more grace and dignity than I have ever seen. When you feel defeated, you are not. You have this victory: that you love and care for this man so very much and you love and care for your children the same. Whatever crumbles during the day, whatever problems, worries, concerns, fears, etc. … I pray you go to bed, close your eyes, and find a small amount of peace in the fact that you are filled with more love than I have ever seen.

  3. Rose says:

    We are in a real financial struggle too. I left my employment to take care of my mom with Alzheimer’s Disease. I am an only child.

    I am about to start my 7th year caring for my mom 24×7 with no respite, no local support other than my husband. We have spent down everything we have – we will never be able to retire. We are sharing one car to cut expenses. I have not had a new pair of shoes in more than four years. My husband (two masters degrees and retired Air Force) is severely underemployed and can not find work in our region. We are unable to move.

    Both my mom were diagnosed with cancer and went through chemo during these past seven years. I had breast cancer and two years of treatment. She had colon cancer and one year of chemo. Both of us are now cancer free.

    This is a very long and hard journey. Everyone has a different story and a hard road to travel. I have no answers other than to keep taking one day at a time.

    • Andrea says:

      May God bless you and guide you as you search your options. Like Opal, who posted above, I am reluctant to allow someone else to care for my husband. Too much worry and guilt. I, like so many others, am praying for you and your family.

  4. Bettye says:

    This is only the start. My beloved passed away 3weeks ago. He went from a sweet kind man with dementia to aggressive dementia in one year, and Cancer. No center would take him because of the behavior issues unless I had a full time 24 hr caregiver plus pay them 8500 a month because it had to be an acute care for the Cancer and a memory center. I fought every battle possible with the healthcare system and he was denied treatments that could have eased his pain with the bone cancer because he was unable to cooperate… Omg… The battle raged till the day he died of pneumonia in the hospital because he was combative with the nurses and would pull out his IVs . There is a trust you can do where you put his income in trust and then the cost is reduced to about 1100 a month because medicade then approves him for pay. I was told if there’s any left over they return in to you monthly. Do I trust this I am not sure but I would take it up with who ever you are seeking guidance from in the system. Good luck and God bless

  5. Jeanne Sapia says:

    I pray for all of you every day. Please ST. Jude show them the way and ease their grief.

  6. Opal Tipton says:

    Morning Karen,
    Just wanted to tell you you’re doing an awesome job, even though you feel like you’re failing in some areas. I so identify with your story except my children are all grown. And for that, I’m thankful. My husband is 71. Diagnosed 5 years ago. He’s also in the last stage. I’ve been feeding him, bathing him, shaving him, dressing him for well over a year now. The dressing and bathing him for much longer! I know how you feel about the stalking! I can’t move off a couch or chair that he’s not right behind me! Sometimes it gets on my last nerve! And sometimes I look in his eyes, and see the confusion…….and I’m broken! Oh, how I wish we could do something for them! But we can’t! My husband is now starting to have days with no bowel movement, and then, look out! I don’t know how he holds it all……but so far, he’s still going on his own. No enemas yet! Thank God. That will be a battle, I’m sure! My heart breaks for you and your children. They’re so young to have to deal with this. And to watch their father, dying slowly every day, unspeakable sadness! I can only tell you, take it one day at a time. One hour, one minute. To think too far ahead, is too overwhelming. I know from my own experience. I will ask you this. Have you considered Hospice? I know…….it’s a feeling that there’s no hope when you do. That they only have 6 months to live. But it’s not so. I thought that’s how it worked but they can live for years and still qualify for the help. I contacted a Hospice 4 months ago, he qualified and now I have a little help! An aide comes 3 times a week, to bathe him, make his bed, straighten his area up, etc. I also have a nurse twice a week, to check all his vitals, general health, etc. and just to have the social interaction has been a huge help to me. They will also give you a 5 day respite period every 60 days. He would go to a nursing home for that period of time. Then come home after. I haven’t taken advantage of this yet. I’m just too fearful of him not getting as much one on one time as I give him. I get myself all ready to do it, then talk myself right out of it! But with Jim going to a nursing home a couple days a day already means he would probably be fine for 5 days. That would give you and your children a break. To do things you normally don’t get to do. Maybe even take a couple days to go somewhere for a mini vacation! And Medicare pays every dime! No cost to you at all! They also furnish your necessary meds, most of them anyway. Your pull-ups, gloves, wipes, body wash, etc. it’s all paid for. They’ve also furnished a hospital bed, wheelchair, porta potty, etc. it’s all been such a help to him and so for me! I would definitely check into it if I were you. Jim may qualify, for sure. My husband was confirmed in 4 days! And they came to our home so I didn’t have to get him out……I pray for you to get some help! I’m too aware of your struggles because I’m right there with you…..I’m just praying for all four of you sweetie! Hang in there and continue to do the best you can! That’s all you can do after all! Wishing you many blessings today……Opal Tipton

  7. Karen, Many times I prayed for God to take Joe.. One night I prayed to his mother to go to God and ask to bring him home.
    Now after Joe’s death I am so homesick for Joe, to hear his voice. I am ready to join him but I have another book to finish about Joe’s last five years, his departure, and my grief.
    I hope you will call Hospice soon.
    Loving you all,
    Deane Johnson

  8. Diane Chadwick says:

    I have followed you since the beginning. My mom is in the later stages of AD. My dad was her primary caregiver until he got ill 2+ years ago. My sister and I took over her care 24/7 while he was in the hospital and then rehab. Mom & dad both went into assisted living in July of 2013. Dad got better and was able to go back home…he wanted to take mom but he could not care for her. Her disease had progressed and she moved to the memory care section of the center. Mom is now is the final stages and back in February she had a brain bleed. The hospital said she needed hospice care if she went back to MC. We planned her funeral with dad thinking she may go sooner rather than later. She bounced back from the brain bleed but in the last few weeks slid out of her wheelchair and had to have stitches and then it was thought she broke her wrist but X-rays found nothing. Mom has no idea who were are and the only thing she says is daddy daddy daddy….over & over. In March dad fell and broke his hip, he was in and out of the hospital and finally entered in hospice, he just could not get better, he passed away 6 weeks ago. Mom has no idea what has happened. We were working on getting dad Medicaid……we did enlist an elder care attorney. We did not get dad on Medicaid before he passed but we know are trying to get mom Aid & Attendance through the VA…I can certainly understand your frustrations we are going through a similar situation. Right now mom’s income is just dad’s SS which does not cover her MC of $3000 per month, she is in a semi private room in MC. They have been so good and working with us to get us the least expensive room. We love where she is and mom does get a nurse from hospice 5 days a week. They get her bathed and dressed and check her vitals. I pray that a she does not linger but we know this diseAse is awful…..she could last many years, not sure how we are going to pay for her care once the savings run out and that will be by the end of the year. We can sell the home that mom & dad lived in for over 40 years. You do not have that option…my heart breaks for you. Prayers that forms are filled out correctly and the right info is handled for you and your family, I can’t believe how people with AD are just lost in the paper shuffle. It will only get worse. Prayers & hugs.

  9. Ann says:

    I wish I had some words of wisdom. You are in my prayers… I pray for your strength, courage, wisdom, and faith. You are an incredible woman doing an amazing job juggling more than any one person should have to. I pray the answers will come.

  10. Diane says:

    Hang in there. My husband also has young onset Alzheimer’s , he is now 60 years old and was diagnosed 6 years ago. He has been on an Alzheimer’s unit for the past year and a half, hardest thing I ever had to do but it was the only answer for us. When it came to Medicaid, like you we did not have a lot of assets, your home and income do not count towards eligibility (at least not inRI) the paperwork was a real hassle but the approval did come pretty quickly, his disability check goes to the facility and Medicaid pays the balance. An elder care lawyer that I had contacted early in the disease was also helpful with all this process. It all should be easier…..

  11. Diane says:

    Also, another suggestion, if Virginia is anything like RI, start touring facilities now and getting Jims name in, there are very few male beds available in all the facilities I toured with long waiting lists, no one could really explain to me why that was. I had already reached the end of my rope when I started the process, luckily something came up in a good facility within about 4 months, never heard from a few facilities where his name must still be on there list! Nothing is easy with this horrible disease, there should be an easier way.

  12. Hello Karen, I follow your blogs with interest and sadness because like you I am also in a situation of helplessness regarding the care of my mother. Its heartbreaking, mind numbing and at times just terrifying. I have never been this exhausted ever in my entire life. Never knowing when the next conflict will occur, being on guard even while I sleep and having to produce finances for kinds of unforeseen needs is sometimes more than I can manage. I have no words of wisdom to offer, but I do relate so much to you and I think of you almost all the time. Every time I have to perform just one more task, calm mom down again for some imagined crime performed against her, or sit up all night with her because she cannot /will not sleep, my thoughts run to you and I wonder whether you are perhaps doing the same things. You and your family are in my prayers. Our world for all its sophistication is very unprepared for this disease and I often wonder how many people have suffered with no help… particularly in the countries that are already third world countries… I am hoping to have mom placed in a home soon, so that she will receive the care she needs but there is so much red tape, endless forms, rules and limitations that even the search is exhausting. Like you mentioned. I also wonder if “they” are just trying to wear me out so that I will stop trying… *Hug* from me to you…

  13. jana says:

    Karen, a friend of mine who works in the V.A. sysytem asked if you had been i touch with a patient advocate? She said they have one at all V.A. sites. Sorry, i know you are getting so many suggestions that you have already addressed or tried so if this is redundant please forgive me. I sent your blog link to Bill O’Reily. He works with veterans with combat injuries but I hoped he might take an interest in Jim’s situation and get you some help. Karen, it just takes one person who has some leverage. Hang in and keep trying. Maybe someone will read your blog and have a solution they have found which will help you too.

  14. Martina says:

    Have you tried having Jim evaluated by Eastern State Hospital? If he is a danger to himself or others I believe he would meet the criteria for admission

  15. Sandy says:

    To All of You…. 25 years ago we went through the same challenges with Jim’s mother’s care. It’s so sickening that Karen has to struggle through the exact same problems this many years later. My heart breaks for all of you.

  16. Barb says:

    Our experience with my father-in-law was that Medicaid wouldn’t pay for assisted living, or none of the assisted living places would take it. You might contact your local Area Agency on Aging and ask for (or do a search for) the local Aging and Disabilities Resource Center. There has been a recognition in recent years that there are overlapping needs and services. Our area piloted one, and I think the goal is for coverage nationally. For help with the VA system, you might contact your Congressman or U.S. Senator. Let them try to cut through red tape for you (and, at the same time it will educate them on how lacking the services are for people, including Veterans, who have Alzheimer’s). Whatever you do, don’t give up, and don’t fault yourself.

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