I 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.