Worries

Yesterday started with a bummer of a phone call.  While Ron was out having his morning cigarette, I got a call from the representative who had been reviewing my disability claim through work.  She decided that I will be denied disability.  She had several reasons, many of them procedural technicalities that I cannot go back in time and remedy.  As I started to explain what happened, she interrupted to let me know I can appeal.  I asked if the appeal would go anywhere.  I don’t mind jumping through hoops if it will produce results, but my time and energy are extraordinarily precious commodities right now, so I don’t want to waste any on an appeal that will go nowhere.  She said she really couldn’t answer that – someone else would be reviewing it (just like at my work).  She will send me a letter explaining what I need to do.  If it is feasible, of course I will appeal, but realistically, I know I should tally this up as a lost battle and move on.

It is a blow on two levels – emotional and financial. 

Emotionally, I feel let down.  One more person being unhelpful.  One more hurdle.  One more denial.  One more fight on my hands.  One more entity that clearly does not get it.  I feel like she is telling me I should be able to work and take care of Ron.  This would be impossible for me right now, logistically and mentally. 

Logistically, Ron needs someone with him 24 hours a day, because he can no longer walk on his own.  He needs help getting in and out of bed, off the toilet, in and out of the house, dressing, making food, etc. – you get the picture.  Hospice does not provide any kind of 24 hour care (until/unless he was at the stage when he needed and qualified to go into a hospice home – if we even wanted to do that)  . . . or even hands-on care for more than an hour or two at a time (the volunteers can just be with him, but not physically assist him with his mobility needs).  His family is coming down on Fridays and I can arrange to have some friends and/or my family stay with him here and there throughout the week so I can run errands and do some self-care, but this would not be enough coverage for me to be working again. 

Mentally, I don’t even feel like I could work right now.  I am so stressed and worried and sad.  My brain and soul are on overload.  If I were to leave Ron with someone and go into the office, I am pretty sure all I would do is cry and worry about him and feel like I should be with him.  The job I have is stressful and involves making decisions about other people’s mental health care.  For example, it may (and often does) involve trying to figure out if someone is actively suicidal, or just thinking/talking about suicide, and whether they qualify for state funds to get their issues taken care of – then denying them (much like I was just denied) because they are not quite ill enough or approving them for the least restrictive level of care if they do qualify.  I present to you this very condensed snapshot of one aspect of what I do so that, for those who are not familiar with my line of work, you have an idea of the kinds of situations my teammates and I encounter and decisions we are responsible for making on an almost daily basis.  I feel like this is stressful and delicate work, involving strong professional judgment and high level problem solving skills.  It is not a mindless activity.  It is not something that I feel should be taken on by someone who is struggling themselves as much as I am.  Sometimes, at work, my teammates and I will get yelled at, sworn at, threatened, etc. by those we are trying to help (or their family or friends).  I cannot imagine going through that right now – how could I even handle it with my stress threshold already being crossed?  I cannot imagine listening to the trauma stories and absorbing the little bits of those details in vicarious traumatization – I just have no emotional resiliency left to cope with it at this time.  Right now, I cannot imagine trying to help someone else who is going through cancer or losing a loved one to a terminal illness - believe me, this happened more times than you would ever think possible since Ron got diagnosed . . . and it ripped my heart out each and every time I had to hear their stories.  But, somehow my disability insurance company through work believes I am not disabled, which implies I should be able to work, in spite of my primary care doctor and therapist supporting and encouraging my decision to take the time off to take care of myself and of Ron.

I know I am where I need to be right now.  I am doing the right thing right now.  I do not regret my decision to take this time off to be with Ron.  I do feel in over my head and overwhelmed and very alone quite often, but I am making it work.  I am not giving up.  I am asking for and receiving help.

Financially, this is a blow in that I was really hoping for the 60% of my income to be paid so that I would know I could support the two of us.  I got my last paycheck last Friday, so I am officially on unpaid leave now.  Ron receives the minimum amount of federal disability and I get an even lesser amount from the state to be his home help provider.  Although he needs round the clock supervision and frequent hands-on care, the state has only budgeted for me to provide 54 hours and 49 minutes of care per MONTH - not week - at an hourly rate of pay that is less than half/closer to a third of what I normally make.  In looking at that and comparing it against the time I am actually providing care to Ron, maybe I have to have them out again to reassess his needs.  They were just here about a month ago, but he was using a walker then.  So much can change in just a month’s time and his needs are only going to increase.

I have done the math, and these two monthly checks will cover about half of our monthly bills, not including things like food (though Ron does get a small food assistance allowance from the state), gas, dog food/meds, Ron’s cigarettes, oil changes/car maintenance, home repairs/maintenance, or any other incidentals that arise.  We do have some savings - my own personal savings that I had before I met Ron, and money we have left over from the benefits he had last spring.  My estimation is that our savings could cover us for about four months.  This is better than I was initially thinking.

One part of my brain says, ‘Don’t worry, four months is a long time.  A lot could happen in that time.  No sense fretting about it now.’  The other part of my brain jumps to ‘What if he lives longer than four months?  His health is not getting better.  I can’t leave him to go back to work (nor would I want to or feel stable enough to).  So what we would we do for money then?’ 

It feels sick to worry about what will happen to us if Ron lives longer than another four months.  I wish I lived in a world where I had the capacity to root for him to live as long as he comfortably can.  Instead, I have to worry about him living too long - that we would exceed our savings and I can longer support us.  Sick.  Sick.  Sick.  It is a twisted position I am in.  I am full of guilt for even having these worries.    

Yet, this little voice in my head says it all works out.  If he lives longer and we have no savings left, something will happen.  We will have another benefit.  Or someone will loan me some money.  Or I will max out all the credit cards.  Or I will just let bills go unpaid and declare bankruptcy and let the house foreclose.  Seriously, worse things have happened.  So, that little voice says, ‘Fuck it.  Just keep on keeping on like you are now.  You can’t control it or plan for the unknown, so just go with it.  Do what feels right.  There is nothing more you can do.  And it will work out however it is supposed to.’ 

Today, I like that little voice best of all.  We have some savings.  We will be okay for a time.  We can cut back as much as possible on anything extra.  When we need to, we will ask for more financial help from wherever that may come from.  For today, the bills are paid up and the sun is shining and we have each other.

I have a hard time being direct and asking for help.  Worse, I HATE asking for financial help more than anything else.  It takes me back to going door to door selling magazines or other junk for those school sales each year – man, how I HATED that!  But, people are always asking how they can help and now I officially know we will be in the poor house over the upcoming months.  So, for anyone who does want to help out and has some extra cash to spare (I know, who has that?) here are some things that would be useful:

• Meijer or Target gift cards (or those cash cards that can be used anywhere)
• Skip the gift card and just send along a little cash or a check (made out to Heather Hoffman, since Ron has a very hard time physically getting around to cash a check)
• Gas cards (Speedway, Marathon, and BP are all nearby)
• Cigarettes (or cigarette money) for Ron (he prefers Camel Wides, but will smoke just about anything)
• iTunes or Amazon.com gift cards/gift certificates, so that Ron can access movies and music legally (and I won’t get anymore threatening letters from my internet company about illicit downloading activities)
• Audible.com credits or subscription for Ron, so he can listen to books
• For anyone local, gift certificates to the People’s Food Coop or local businesses where we can get take-out/marketplace food

Keep in mind that we will need help for as long as Ron is living and we are without a main source of income.  What I mean by this is, if now is not a good time, but you feel you would be more able to help out a month or two down the road, we will likely still need it then, so take your time and hopefully we can spread the assistance out.  

To anyone who does/will help, thank you so much!  Our address is 8603 N. 46th Street - Augusta, MI 49012.  I am appreciative and so is Ron.  Due to the situation at home, we don’t really get around to sending out a proper thank you note in the mail, but we do want folks to know that each and every little bit that comes in is genuinely appreciated.  We are often surprised at who is helping and it makes us feel warm and fuzzy and cared about.  Know that each of you are thought of individually and personally – and we will do our best to let you know that, but in the event that you don’t hear from us, just know you are appreciated.

Along those same lines, I want to thank the friends and family who have been helping us.  Thanks to those who stay with Ron so I can get some respite or take care of errands.  Thanks to those who buy me lunches or find ways to pamper me.  Thanks to those who lend an ear and validation, whether via phone, text, email or in person.  Thanks to those who help me escape reality for a moment, or get back in touch with it, depending on which is needed.  Thanks to those who reach out to send Ron cards or surprises in the mail.  You all are wonderful and set an example for me of how I can be there for others, someday in the future, when they are in need.  I know how these gestures make me feel and look forward to extending them to others when I can.