Wednesday, March 5, 2014

Travis is finally approved for SSI (Supplemental Security Income), and life continues. =)

Regarding Penny,

Penny's cystoscopy is in 2 days. We are preparing for the trip to Zion and being away from home for two to three days (with Travis being the only person at home). I am very concerned she is overwhelming her physical well being by trying so hard to accomodate her father regarding his needs. I hope this doesn't sound selfish (but it is... I know as I love my wife with all my heart and I am seeing her try so hard to give to her father with the time they have left while... but I don't want to lose any days with her as a result). Very selfish of me...... =(  but  can't help it. I am presently watching a documentary called "LuLu" on WorldChannel (a PBS alternative station). It is about a world reknowned medical researcher (Dr. Louise Nutter) who lived life hard and who also created drugs to combat illness (including cancer). It has me thinking about how much time one has left in one's life. I feel like I am slowly wasting away while trying extensively to keep ourselves stable in a sea of chaos (with the cliff always around the corner). It seems to me that Penny and I are seemingly never going to have the opportunity to just "relax" in our lifetime as there is always something we have to battle for (as it has been for the past 24 years). I really need to sit down with my Bible and meditate / pray on this........ and yet, the medication I am on seems to be the only solution to calm me down enough to not cry. I am spending a lot of time with depression, and it isn't getting any better while we keep dealing with situations that are difficult to resolve.

Regarding Travis,

Travis and I walked into the Social Security office in Woodstock on Monday as it was about to close (we had received a letter indicating that I had talked to someone at their office on Feb. 26th... the thing is, I received no such phone call). They had decided that Travis cannot manage his funds and that he required a representative to manage his funds, and they picked me). So we talked with the Social Security rep behind the counter and Travis decided that I will be the representative given my handling the family's finances already. And then, we asked the status of the claim and found out that it is APPROVED!!!!!! =)

Normally, the SSI amount is slightly over $700. Unfortunately, the financial formula for those who are working Part-Time is such that they get minimal funding (in Travis' case, around $110 per month as they deduct over $240 from the $700 using the formula what he gets help on from his mother and I). So now we need to sit down with the young lad (and get help from an attorney) to establish what he will contribute to the household. Ever since he started working via District 300 six years ago, we have not asked him to contribute to the household. That may have been a mistake when using hindsight (as he doesn't understand what it takes to manage a budget for daily living). We will be praying hard on this issue.

Regarding Penny's father,

We are now into Week 3 of Penny's father temporarily coming to live with us. The situation is such that he is not improving (he thinks he is, but he honestly isn't). His single goal is to move back to his mobile home. Penny and I are very frustrated as he is not being truthful to his caregivers and has many unrealistic expectations. It is like we are fighting molasses regarding his need to be on his own (given his inability to do so) and we constantly argue about the same issues. Despite the evidence, we are accused by him of making it a bigger issue than it is (when it is actually much worse than he believes it to be). So he spends his time answering medical questions as if he was a 30 year old - young - and spry (and he will not mention his issues when asked or omits information so the medical professional doesn't pry further). This is making it harder on Penny and I as he is constantly changing his mind regarding his future (his illness and emerging dementia are part of the problem). His home healthcare medical team is intent on only working within the confines of what time frame has been allowed by the Insurance company. They continually give him platitudes that he is doing great and should be released from the need for additional care (sabotoging our efforts to get him the help he needs as he clings to anything positive as evidence that he is perfectly fine). We are desperately trying to get a Neuropsych consult done to determine his future care and to get an unbiased opinion / evidence of his present condition (and to have established what <if any> limitations he has mentally and physically) so we can have the answers needed for future care. We believe he is a danger to others if he tries to drive. His doctor agrees. He doesn't seem to care though (he is more concerned about independence than for who may be harmed if he is unable to react normally to any traffic situation). His Parkinson's disease is not mild, he is still very stiff, his right arm shakes extensively when he is not looking, and has weakness in his left arm and his left leg. He is unable to zip up his coat or put on a seatbelt without help (and is one fall away from a broken hip).  And his house is a disaster area that will take weeks to clean up (Penny and I are in no condition to do this)..... meanwhile, we now have a person who is adding to our costs of living (and yet, he is unable to help us with any of those costs as he is keeping his mobile home - even though realistically.... he will not be able to live alone again). The irony of this fact is that next month, we won't be able to pay our mortgage nor our car payment (due to my continued unemployment and no income) does not register in him. Instead, he just continues to complain about the fact we keep our furnace at 69 degrees (while he keeps appliances, TV's, and lights on in every room he leaves). If it seems like I am being petty, imagine having a 16 year old that doesn't listen to a thing one says (and demands that we adhere to their requests) and does what they want to do anyways..... it is unfortunately like that.
Regarding me,
I again spent over 7 hours at the VA on Friday (with the Audiology department).
  • Audiologist - So the tests on Friday was the spinning chair -  V.N.G. (Videonystagmography) test and then the V.E.M.P. (Vestibular Evoked Myogenic Potential) test this afternoon.
    • On March 13, I will be going for a C.D.P. (Computerized Dynamic Posturography) test.
I also saw the Psychiatrist this afternoon and brought her up to speed regarding everything I've dealt with in the past 2 months. At this point, it seems to me that all she can do is treat my symptoms (but can do nothing to resolve what I am going through). It will take the VA psychologist's efforts to help me find coping mechanisms for me to be able to eventually function without medication. Penny pretty much knows now when I haven't taken my medication yet, as she sees me "jumping out of my skin" (as she puts it).... she sees me getting very frustrated easily (and then I take my medication and then I get so tired and yet, can't sleep). it is a very frustrating cycle, especially since it snowing every couple of days and getting bitter cold on the other days (we are literally stuck in the house as we have no funds to go elsewhere).

I am frustrated about so many things, and I really need to sit down with God tomorrow and engage in some serious prayer (as I truly need to give it to God).

As I have said before, by the grace of God go I... as I am dealing with this as best I can (I just wish I was handling all of this better than I presently am).


  1. As you know, your mormor, Helen, dealt with adversity with grace and courage. She is one of those with the most influence on my life. I see you doing the same. You are also creating a ripple on the water. I hope you can relax one day.

  2. Mette, thank you for your comment. It seems as if our family tends to deal with adversity generationally (Mom did so also). I really miss both mom and mormor, and I wish my own children knew mormor as we knew her. Indeed, she dealt with a lot... and yet she was always the calm in the storm (she was a main influence in my life also). I have no clue how I would have made it through childhood without her.


All comments are moderated due to the blog being Public.